William syndrome is a rare neurodevelopmental disorder caused by a microdeletion on chromosome 7q11.23, affecting approximately 1 in 7,500 to 10,000 live births. It is characterized by distinctive facial features (broad forehead, wide mouth, full lips, flat nasal bridge), strong verbal and social abilities combined with significant difficulties in visual-spatial tasks, and a high prevalence of cardiovascular issues (up to 80% of individuals have supervalvular aortic stenosis). The condition requires multidisciplinary management including cardiovascular monitoring, developmental therapies, and educational accommodations. The William Syndrome Association (WSA) is the first and largest organization supporting individuals with William syndrome and their families, providing advocacy, research funding, community connections, and educational resources.
Weekend for Williams 2026Hinzugefügt:
Hi everyone.
>> Hello.
>> Let me kill the music here. Listen, you get to see the evidence of the break.
>> So, we are back.
>> You got M&M's.
>> We are back. We are back. We are back.
We're so happy that you are joining us uh for Weekend for Williams. Um we are here for the third annual. Um and right now it's just Sarah and I, which is fitting because that's how this all started. Um, and the first one that we did of these was um, the two of us thought it would be cool if we went live on Zoom all night like for we thought we were going to do like a classic Jerry Lewis teleathon and we were on Zoom and it was like two in the morning and no one was watching and we're like of course no one is watching because it's Zoom and it's the middle of the night >> and um >> I know >> so we Okay, so we learned from that. So then last year the two of us went live together >> uh from uh just outside Atlanta, Georgia and and that was a lot of fun.
>> Uh I mean it was it sure was long >> and um but we you know we had a good time. We had lots of we had you know it it's like this we had lots of guests join us virtually we had guests join us uh in person but um yeah now we uh and so now we are back again third year uh I mean hey look at the graphics in the background man this is all fancy now look at how fancy we're just we're all fancy so let's go uh we can do look it's um you know and you know what This is This is a power hour.
>> Oh.
>> Uh all donations up to Is it all donations up to $1,000?
>> Let me look.
>> Uh and we'll tell you who this uh power hour is sponsored by.
>> Um and let's see.
This power hour actually um this power hour is all donations up to $2500 $2500 >> are doubled and this donation is uh from Susanna Morgan and Joselyn Krebs. So they are matching all donations up to $2500.
>> Thank you. Thank you to Jocelyn and Susanna and Reese. Um, so, uh, yeah, just that's very, very, very kind of me.
>> They're actually sponsoring two p power hours during this weekend. So, you hear another one tomorrow.
>> Last year we had them on during a power hour that they sponsored. And this year it doesn't work so well because the Philly walk is tomorrow. Yep. And Suzanne is the chair of the Philly walk.
And if you so if you uh are in the Philadelphia area, if you are in the greater New York City area, etc., etc., etc., well then uh and you haven't heard of the Philly Walk until just now, where have you been? But also, hey, you're still welcome. You should go to the Philly Walk tomorrow uh in it's so I should know where it is.
It's like >> something park. Um >> I was there last year. Something Farm Park.
>> Oh, Farm. Yeah. Uh, let's see.
>> Hold please.
>> Hold please. Uh, la >> cue the Jeopardy music.
>> I unfortunately I can't I don't know how to make things have music on this one unless I'm >> Oh my god.
>> I shouldn't say that. I don't know on this platform how to do like my silly dumb sound effects. Uh, but you know, hey, it's it is what it is.
>> If Paula was sitting here, she would know.
>> Um, uh, it is. I saw it and I saw it earlier in the chat.
>> Ah, Wilson Wilson Farm Park >> in Chester Brook, PA.
>> Chester Brook, PA. Shout out Chesterbrook. P Chesterbook, Pennsylvania. Uh home of this year's uh Philadelphia walk. Go join. Do Do we know what time it is? It's like tomorrow at I see maybe I should have just 900 a.m. So get up. get up and go to the Philly walk. Um, so Lyanna Carter is joining. Just just chat uh in in the chat. Lyanna Carter.
>> Um, I'm so excited to meet uh Lyanna in person uh and her husband and um her do their daughter. Uh Lyanna is a professional uh singer and a wonderful artist and she's going to come in tomorrow. We're going to chat for a little bit and she's just going to hang out and play some music and um you know and just join us for some just some fun times and uh so uh yeah so we're um yeah thank you. Well so thank you Lyanna for for popping in and seeing what you're about to what you're getting yourself into. So, uh, yeah, but, um, I promise that we'll be on our best behavior and or behaviorish. So, uh, all right. We, um, >> sometimes on live TV, you have to pause for a moment.
>> Yeah. But got to >> pivot.
>> Yeah, we're going to pivot. So, we um, we were to be joined by Robin Peg, um, educational uh, expert extraordinaire.
Um and uh but she's just she's schedule uh hiccup and um so we are going to um yeah you know you at the very beginning of this and hopefully hopefully there's some people that got notified that we're going live or maybe uh once again y'all can uh share this share this feed if you're on Facebook, if you're on YouTube, you can share it uh share it to your social media platforms that uh We are live and um we would love it if people uh people joined us. So um Sarah actually can you take over because I actually have a thought on something that I just want to uh I want to see if it plays out here.
>> I was just going to go on the book faces here and share this back to my personal Facebook page again really quickly though. So while I'm doing that because I'm not so great at talking and doing these things. Uh Luke asked uh we I've been saving all the co the convention questions so we can answer them in a group. Uh but Luke was asking about the Taste of Buffalo. Taste of Buffalo is a really cool food festival that's happening um in Buffalo the pretty much at the end of our convention.
So it's happening at the end of convention. Like I said, we are not scheduled to go to it, but uh Sunday the chat there, it's 5:00 p.m. ADHD like meds are wearing off a little bit. So now I'm very distracted by the chat. Um Sunday after convention is a perfect time to go. Sharon, it's so good to see your face. We got to see Sharon at convention. So, that is super awesome that we got to see her. Um, so I'm going to let the rest like other staff members if they want to come back in, you can join us.
>> Yeah. Or take a break.
>> Yeah. Or do whatever you want. You don't have to be sitting here if you don't want. We're going to kind of go back to basics a little bit. Uh, we hopped right into programming and and didn't really take a few minutes to explain um uh what is William Syndrome like? Who is it that we we serve? Why are we here? What is the WSA? What do we do? So, we're just going to go back to basics um a little bit. And I know we've got some videos we probably could take care of. Do you have something to do this with or what are you >> uh No, I'm actually creating a video on the spot.
>> Wow.
>> Yeah. We're gonna we're gonna see and and we're going to debut it on the spot.
Uh and and see what it's like.
>> It happened here first. Oh, I can't even see.
>> Yep. So um >> but uh yeah but we you know we we thought so what one of the thing well at least as of right now so right now we have um the four of us sitting on the couch um all happen to be parents of individuals with William syndrome of varying ages and um and and right now we're at and with Megan who uh is is not joining us but you'll get a chance to meet her tomorrow um we now have five people on staff at the WSA who are all uh who are all parents and who all have uh I don't I don't love the phrase, but we all have skin in the game. Like so, you know, the the working for the WSA isn't just a job for us. We, you know, we desperately want uh everything to go well because if it um if it helps the community, it helps our kids, too. Um so, my son, I I guess let's just we since the four of us are here, let's just quick I'm my name is Joel. Let's reset.
>> Let's do a whole TV reset. Um once Yeah.
So, this is the weekend for uh William Syndrome. My name is Joel Listman. am the director of family support for the WSA, but more importantly, I am the proud father of Bennett Chili Pepper Listman. Um, and he, um, yeah, he's just, uh, he's just the greatest kid. My wife and I, my wife Jennifer and I, and Bennett all live in Minnesota. So, um, let's, let's go over, let's go over here this time to this person I'm pointing at.
Hi, my name is Pava Martinez. Um, I am the development manager for the WSA. So, I oversee walks and golf tournaments and any fundraising initiative that you are thinking of. Um, I'm the very just like Joel said, I'm extremely proud to be the mom of Enrique. He's a 9-year-old boy with William syndrome, also the mom to Leo, his younger brother. Um, and along with their beautiful, incredible fathers, we live in Miami, originally from Puerto Rico. So, Spanish, anything that you, you know, want to communicate, we are Spanish speaking over here. So, welcome. Um, and my my fellow Floridaian.
I'm Sarah Schaefer and I'm the executive director of the William Cinema Association. Uh I h mom to uh Matthew who is 23 who has William syndrome. Uh he at some point in time we should probably start talking about more stuff a little bit more about our kids and things but uh he he was diagnosed at 13 months. Um, and uh, miss we I'm thinking of all the things we've talked about already and uh, I think we can tie lots of different things in, but uh, he also has an autism diagnosis. So that uh, though all William syndrome looks different, it makes his William syndrome look quite a bit different than some other people.
And so uh, you may not always see him at some of the events because sometimes that's just uh, too much for him. This is good broadcasting.
This is entertainment right here.
>> Speaking of too much, >> to be honest, >> I honest to God, I thought I could at least plug in this into the outlet.
>> This is like Little Shop of Horrors. I think the plan is God.
>> Yeah, I'm terribly sorry.
>> Yeah, terribly sorry. I was just My computer is about to die.
>> Yeah, >> Sarah's delivering this heartfelt statement.
>> I know.
And bridge troll over here is just >> Oh my gosh. That's all right. Um >> I think we'll I mean eventually we'll talk more about how everybody you know came into the organization. John kind of shared that story already. Um you know I started as a volunteer over 20 years ago. Uh served you know the the area where I lived out when I lived in Arizona at the time and uh started doing that and fundraised. So did walks and we did the concert one day. We did softball tournaments. We did all those things and then just kind of stay involved. uh joined the board and then from board shifted into staff part-time and then grew my roles and over the last few years there's been lots of change in the organization and uh now I get to uh lead this incredible team and uh serve this just amazing um community of uh families with with William syndrome and individuals with William syndrome and we I meant to say it earlier but uh you know you've already seen some people hop on uh who are just incredible. And somehow we just have uh the the most talented, giving, incredible people in our community. And uh if you if you need it, somebody's got it. If you need that skill or talent, uh somebody has it. And it's just it's just incredible to watch.
And it just continues to get uh better and better and uh more more exciting.
And as we talk through some of the programs we're launching and uh we'll see how we're going to where we're going to pivot to this this hour, but we probably should still can talk knowledge network a bit, but uh um everything we need uh seems to present itself and that's amazing stuff. So I'll hand it back over here.
>> I'm John Kent uh VP for fundraising and communication and I live in Nashville, Tennessee.
brief, but I I went into a bit of my story. I've been involved for 25 years. Is that Yeah. And so been around and been on staff uh for two years.
>> Hi. Hi, I'm Laura Spinny. I am the VP of programs. I have a 27year-old daughter with Williams. Gosh, we she was diagnosed when she was two and I pretty much got involved right after that. Um and have maintained that connection since. and wouldn't do it any other way.
Awesome.
Everybody breathed at the same time.
>> We sure did.
>> Oxygen is important here. Yeah.
>> Mhm. Um Yeah. So uh so let's take it uh all the way back. Um Ben, we are doing good. We are pivoting and um and and we we thank everybody right now. There's uh a a good chunk of people joining us online right now. I guess I should I just want to check and make sure that we are indeed broadcasting on all of the platforms.
Um we I want to be live. I want to be I want to be live. Yes, we are live. And Instagram is possibly live.
>> We are all AI. We're actually AI characters.
>> We are. Yes, >> I'm Joel. Joel's being >> here, wouldn't it?
>> I hope I hope she's still here. Shout out to my dear friend Mariela Elm.
>> Uh Mariela and her father. Uh Mariela and her father are uh they wrote and performed the theme to the Starey Podcast, which the Starey Podcast, if you're not familiar, is uh the WSA podcast. Um and tomorrow we will be doing a live episode of the stareyed podcast which will be episode 100. Uh so very very excited about that. Um so yeah so we are um we are on you know what I just realized sorry I need you guys to take >> Tommy I'll tell Tommy I'm also uh he scored some of I did a film 2011 starring Ben mana uh and his mom Terry and um and Tommy was kind enough to do a score uh for part of that which was beautiful um so really appreciated that and Um, and that's all I have to say.
>> But I can keep spinning. I can keep spinning the web.
>> You know, we uh we just we are just pausing a little bit and going back to the beginning a little. We, you know, reset the feed. So, we started the video again. And um that uh it's probably a great time to talk a little bit about uh you know, what what's the WSA? Who are who are we? Why do we exist? What do we do? How do we do this? We talked a little bit about it in the in the previous few hours, but um you know the D the William Syndrome Association uh was the first and we are the largest uh organization to support individuals with William syndrome and their families. Um we uh are we are a nonprofit. We have a board of uh board of trustees who uh are made up of uh parents uh siblings of individuals with William syndrome.
That's the current situation. We have a cardiologist on our board of trustees who actually sponsored our uh first power hour today. Um and then we also have individuals with William syndrome sitting on the board because it's incredibly important that anything we do we uh have that voice of uh of the people that we serve when we're making those decisions. So uh that is our board. We've got a staff right now sitting at uh nine which is pretty incredible. um that is going to grow a little bit more in the near future. And then we talked earlier about our family network uh of that we're uh working on expanding again of volunteers throughout the country and that will be led by a few contractors uh consultants that will help us lead that entire network. Um, I think one of the things that people don't necessarily realize is how the William Syndrome Association is funded and why why we're doing things like this. PS, it is a power hour. That actually means that all donations that are made in this hour from I don't even know what time it is, 5:00 p.m. Eastern to 600 PM Eastern are doubled up to $2,500. Uh, that uh Bat Power Hour is being sponsored by Susanna Morgan and Jocelyn Krebs. Thank you.
Thank you for your incredible generosity. So, all donations are doubled. So, if you missed it before, Joel has already said anybody who makes a$1,000 donation in one chunk. He will just we will go live. He will jump in the pool. In a power hour, you only have to donate $500 for that donation for the the pool jumping.
>> I didn't think it all the way through.
>> I know. It's perfect. I do think >> we did change the rules a bit.
At one point in time, I think uh we had somebody on staff asked uh if she donated $100, if she could pie Joel in the face. John said he'll match that if he can be the one to do the pie throwing. So, we have to clarify from Bethany. Does does she want to physically throw the pie? If not, then we might have be on to something here as well. We might be doing some outdoor stuff tomorrow.
>> A dunking booth would be like I think that'd be a goal.
>> We're only 3 hours and 20 minutes into our 10our stitch. Can we get a ducking boost?
>> So, uh, we might be doing some outdoor activities later tonight to keep things exciting, but let's talk about funding.
Uh, you know, we're doing this live broadcast for two days. Uh, we do a big um annual appeal in the fall. And why?
Um, so I think one of the things that people may not know, and I probably should have let John speak to this because this is his gig. Um, you're doing great.
>> But, uh, the Williams Center Association is 100% privately funded. We do not have get government grants. Uh no government funding. Um large corporations don't particularly uh uh fund small organizations for rare disorders. Uh there is not much return on their investment in uh situations like that. So, uh, it's hard it's hard for organizations that make grants to, uh, justify, you know, giving funding for, uh, for a rare disorder that that, uh, impacts such a small number of people. So truly everything we do, all this amazing work that happens is uh is possible because of uh everything that you all do and the generosity of our donors and the generosity of our volunteers who host walks and host fundraisers and the the you know the generosity of all of these volunteers out there that are raising awareness that that then does uh lead to donations and our incredibly generous uh uh donors. We've got uh families and friends of families and connections who uh understand how important everything that we do is and have just been incredibly generous. So, uh we can't do the things that we do. We can't have camp like we had last weekend without incredibly generous families uh like the Louiswises who just had their golf tournament uh who are very very passionate about camp. We can't host our convention. we can't do all of these things without uh these donations. Uh there's there's also I think a misconception out there and in lots of corporations something like a convention is a huge money maker like you get these big sponsorships from pharmaceutical companies or major major organizations and they don't cost the organization money they make the organization money and with us uh that is the exact opposite. So, our programs are where uh where a big chunk of our money goes to.
Uh we've got camp that costs a lot of money and we try to keep the cost of those items as low as possible for our families. So, though camp feels expensive, I know to so many people convention feels like a huge lift and it is. It's a that's a lot of money to spend to come out and uh in invest in your family and and invest in uh the the health of your child. But uh we do everything we can on our side to keep those expenses as low as possible. And we can only do that because of such generous donors. And so again, thank all of you for everything that you do. Thank you to all of our donors for what they do. Um I'm just checking and seeing if there's anything else I want to say about that.
You want to add anything? No, I mean what you said about we have to support one another because uh we we will not attract funding from giant foundations or corporations. Um as Sarah said, they're they're not interested in rare diseases. We have to uh realize that um just because people give a lot of money, there many great causes and they're only going to give to something really meaningful to them. Um, so in a sense we're we're a family that has to sort of charity begin at home, I think. And and uh >> well, and I think we said it in the last in in our first go round here is one of the most impactful things you can do during this live broadcast this weekend is take this video wherever you're watching it and share it. So if you're watching it on Facebook, hit that share button and share it to your Facebook page. Uh because we also don't want to depend on funding just from the families that are impacted. And so if this can get shared out uh to other people, that's where the magic starts happening.
That's how awareness works is more people start learning about William syndrome. They watch these these types of broadcasts. That's why we do this. We do this uh so more people can hear those stories on why uh why, you know, funding an organization like this uh is so important, how it's so impactful for families. So this is why we why we do these things. So, if you can take this video, share it out uh anytime that we start a new thread, a new string, just to to get this going again, share that out with people. You can also go on uh you can go on uh wsa anday.org. You can start your own fundraiser. Share that out there. Uh we haven't said this in a while, but it's super easy to give.
We've got some stuff on the screen that can tell you how. You can go to wsenmay.org to give. There is a QR code on the screen you can scan. If you're watching this on your TV or on a laptop, you can use your phone to scan it. You can also text WSA to 71777.
And that uh makes it super easy for you to donate. And when you donate that way, you can use Venmo, PayPal, Apple Pay, Google Pay, you can use a credit card.
Uh so that's a super easy way to give.
Then >> we just had a donor who gave uh appreciated stock to the golf tournament. So, one kind of savvy way to avoid capital gains uh taxes, you can if you have stock that you want to donate, you can contact us and and donate the stock directly and then you get a credit for uh the price of the stock at the time of transfer. If you like the stock, you can just buy it back at the higher uh at the higher uh price. But it's a really smart way um with stock appreciating as it has kind of across the board. Well, not across the board, but stocks are doing well and it's a it's a really efficient way to give. Um so if you're ever interested in that, you can reach out to me directly and we can hook you up. Um, anytime you do any financial move like that, you you should always check with your advisor just um because we do not provide financial advice, but we just do have that mechanism and it's it's a great way to give.
>> So, sometimes it's good to check your phone while these live broadcasts are happening. Good for us, not good for you necessarily.
>> Oh, no. So, uh, we've got a pretty amazing, uh, camp counselor who was there volunteering with us this week who said we're providing entertainment while they drive. So, uh, I'm driving and watching with Jaci. So, Christy and Jaci are watching us live on their drive.
She would like to donate the $500 that will be matched to get you to jump your butt in the pool.
>> Yes, Christie. I'm not I will finish texting, but I would like you to let us know when you're not driving anymore so it's safe.
>> Uh so then you can really enjoy watching him jump in the pool. So that is happening. So yes, you will have jumped in the pool. Now we need a new challenge. So we're going to have to think on that one.
>> I have an idea.
>> He while he's leaping, I could throw a pie in his face.
>> Yeah, this is a twofer. He could be he could be a >> uh real quick to uh to Tain Larson who's having you might need to refresh your Facebook. We did go it's a new feed now.
So you might need to go and and recclick on it and find uh the new the newest feed. Uh I mean I can confirm that we are broadcasting on Facebook because we uh are getting we are getting people uh commenting there. We have a group of people here. Um, so, uh, yeah. Wow. Um, >> fully clothed.
>> Yeah. No, I mean, that's fine. Uh, >> and we get to pick out what you wear, too.
>> You're going to pick out what I wear after.
>> No, that's that's up to you.
>> Or you want to No, you want to pick out what I wear to jump in the pool.
>> Well, you got to have some WSA swag.
>> Okay.
>> Yeah. Yeah, I I'm I have Hey, I have uh stinky closet.
>> You got all kinds of dirty.
>> I have stinky cat clothes that all say WSA on them. So, I'm happy to do that.
>> Well, we don't want to contaminate the pool from your stinky.
>> Uh Tayen, I can't send you the live because um all of my devices are being utilized in order to bring this. So, you need to just find uh Facebook and uh relaunch it or go to Instagram or go to YouTube >> um and it will be there. Uh Big J Entertainment 247 joining us on YouTube.
Hi.
>> Hi, guys. Uh great to see you. Um okay.
Uh lots of people. Um well, Tayen, I'm terribly sorry. I don't mean to I I don't It's Facebook, man. You You just got to go on Facebook and look uh look for the you know, go to the William Syndrome page on Facebook and then scroll down a little bit and you should see the live feed.
>> It's It's there.
>> Toby has shared it on his page.
>> There you go. Okay. Toby.
>> So, go to Toby's page >> or mine. I shared it on mine.
>> Yeah.
>> There you go.
I am unable to share it on mine because once again >> I am using all of my devices to >> uh to do this. Um >> don't forget it's a power hour. All of your donations up to $2,500 are doubled this hour and you know we need a new we need a new incentive because we got our $500 $500 double to a thousand and Joel's jumping in the pool there. Yeah.
So Christie put uh uh in um in the chat there that uh it you know that the heart hand. So I don't know if that means that Christie is already watching.
>> They're watching while they drive.
>> They're watching while they drive. Okay.
>> You're entertaining them while they're driving.
>> Oh, I get you. So okay. So, uh you just let us know when uh and then we'll I'll get the the mobile uh the mobile command unit the WSA mobile command unit uh on uh set up so that we can um so that we can >> uh make this happen. Um all right.
Um okay. So, uh this this video meanwhile I'm currently also making a video. Uh let's see.
>> It's multitasking. Yeah, it's and I'm sure I'm sure it's going to be great.
>> Um, let's see.
>> You need some more time.
>> Um, well, you know, I have let Well, the thing is, here's the thing. Uh, yes, I need a little bit more time just so that this exports.
>> Um, and >> great, >> we are going to do a local export and we are going to do the current account. So, if you are hopping on here hoping to not see our goofy faces, but to see Robin Peg's face, we had a scheduling uh we had a scheduling snafu.
So, we will work on when we can bring Robin on. So, that's why we are uh just chatting it up right now. I'm also texting with Matthew to see if he wants to come on at some point in time. I know that tomorrow's super busy, but I think Matthew might be able to join us uh within the next couple minutes, which would be cool because he didn't, I don't think, join us last year. So, >> yeah, he wasn't even >> It was uh Yeah, I think he was having a bad day last year, so we're going to have him join us in a little bit. Um >> Power Hour is Susanna and Joselyn.
>> Yes, Susanna and Joselyn sponsored this Power Hour.
>> And Susanna Morgan has maybe my favorite laugh of any human being. My gosh, >> her laugh is contagious. It is just totally joyful.
>> Incredible walk chair. She's hosting the Philly walk tomorrow. So, good luck to them. It's gonna definitely gonna be a party tomorrow in Philly.
>> Yeah.
I need to find >> I can't talk and do this at the same time. It's terrible. John, what else you got? tomorrow. Uh just to give you a glimpse of what's ahead, I'm thinking about my uh interview with Avi Leser from Chicago and his mother Carol Patinkin. I did a couple of short films uh with Avi that were a lot of fun. One um followed him to Graceand in Memphis and turned the camera on him there. We were there for five hours in Graceland.
Uh that was a a lifelong dream of his.
And then he also uh did a Nashville trip and went to a lot of the music places there.
Was it that Christie Christiey's comment?
>> I love it.
>> You're ready, Joel. Jaci's both making you jump in the pool and requesting a cannonball.
>> All right.
I think uh I think that's great.
>> Uh I mean I have no complaints.
Cannonball. Can we kick in for Cannonball?
>> Yeah, I'll >> just make sure you jump in the deep end, Joel. Yeah. Otherwise, >> otherwise it would be a tragic weekend for Williams, I think. Um >> Yeah, we don't need that.
>> No. Anyway, so we're going to show those two films tomorrow. They're they're shorts and with Avi and Carol uh on the on the feed. And uh if I know Avby, he'll he might break out in song at any moment. Uh if he doesn't then we should have him.
>> It would also be a tragic weekend if >> Yeah, it would be tra Yeah, it would be it would be it would be unheard of. So they are attending convention I'm happy to say. So we'll >> Oh, it'd be so great to see them then.
>> Yeah.
Okay, let's see if we can make this happen. We are going to um Nope, that's not how I want to do it. I should just be able to >> go Oh, here we go. This is what I need to do is this guy right here.
>> Listen, we are high tech this year.
>> Um, we are going to go to the video and I don't know why those ones are >> high tech.
>> Um, okay. Well, let me try from let me try from another source here.
Let's go back. Hi everybody. We're back.
Um, let me try it from here because like I said, I have multiple things here.
>> What is your goal >> to play a video?
>> What is your goal?
>> What is your objective?
>> What is your purpose doing?
>> What do you want to do with your life?
Where do you see yourself in 10 years?
>> Oh, yeah.
>> Uh, that's the John Kent. That is uh maybe it hasn't finished.
Maybe it hasn't finished up. Uh, yep.
Okay.
>> Uploading into here.
>> I have been taking photographs and video for 20 something years. So, I have I am sure that I have terabytes and terabytes of footage on William syndrome and it is a lots lot of fun to visit and watch.
>> Lots of photographs. um been working on a book that will be 20 years of William Syndrome photographs.
Um hope to have that ready by convention if people want to order it. And if so, all the proceeds will go to the WSA, but really looking forward to seeing that through to its conclusion.
>> Okay. Um and yeah, that's going to be that is going to be awesome. Uh video still >> that's me again. still uploading here. I guess while we're waiting, uh maybe we can't we watch John Kent's video from last year.
>> Well, I couldn't make it now.
>> Just waiting for this thing to load.
>> It'll be ready as soon as Matthew's ready to be on live and then we'll have to decide what we're doing.
>> Well, Matthew will always trump a video.
Will always be more important than a video.
Mhm.
>> Okay. So, Christy and JC will be done driving in a couple hours. So, I think in about two hours, so we can just >> It's night swim. Yeah, that'll be good.
And then I'll I'll Yeah. And then I can then I'll be ready then to uh do the social club.
>> All wet.
>> Yes.
>> Oh, yeah. Perfect. That that'll be perfect. We can either do that. Oh, yeah.
>> Perfect.
>> Um uh Okay. So, this is uh you know, all things are fun. Technology is fun. Um, yeah, we are. Uh, we're terribly sorry that we're having to pivot like this.
Um, >> are you still doing that?
>> Uh, I am.
>> Okay, then I'll make this happen then.
>> Social Club reminds me of our sort of our new branding >> which I know many of you have seen and the cool logos. trying to have a family of of fun uh logos that um that represent the programs and and have some visual integrity and um so we're excited about that. excited about some new items that will be at the um convention in our store and uh that we'll be sporting the new logo and we'll have some of the of the traditional the Hearts and Hands logo which is uh which is as we know is the uh is is really important to our community. And so, uh, we'll have some of the some of the secondary logo, we call it, with the WSA, like I'm wearing.
Uh, >> oh, hold on. I have to believe they're not able to see you right now.
>> Boom. Uh, yes.
>> Oh, yeah. So, this this uh the the secondary logo as we refer to it. Um, we'll have some shirts and different items with that and we'll have some hearts and hands, a traditional uh primary logo. Um, but uh again our our our friend and uh colleague really now Jim Vienno who did the design. Um I think we've got a great great logo family and uh it really looks good on >> looking fantastic.
>> Sharp.
>> Okay. So we're going to add we're going to go to No. Come on.
>> Oh Katie asked how camp was this year.
Camp was amazing. and Katie. It uh it wasn't It was hot, it was rainy, uh but it was really really great.
Everybody seemed to have a really great time. Uh did a good job of making sure everybody stayed hydrated and uh had lots of great snacks and things. It was really fun. Lots of fun activities at camp. It was Laura's first time at camp like ever.
Yep. Are you ready for Matthew?
>> Yeah. Oh. All right. Matthew's gonna Matthew's gonna join us. Way to kick in.
>> Matteo.
>> Yay.
>> Hi.
>> Hi, Mom.
>> How are you?
>> Hi, everyone.
>> Matthew hasn't seen me for a week, so this is uh the first time we've gotten to chat in a little bit, huh?
>> Yes.
>> Yes. So, thanks for joining us.
>> You're so welcome.
>> How are you doing?
>> I'm doing good.
>> Awesome. What you up to >> talking to everyone? I'm so excited.
>> I'm so glad you could join us. So, would you like to tell everyone a little bit about um how about we What do you do to keep busy?
>> Well, I volunteer.
>> Awesome. Where do you volunteer?
>> At Salvation Army and um St. Vinc.
>> Awesome. What do you do at the What do you do at at the Salvation Army? You at the thrift shop, right?
>> Correct.
>> What do you do there?
>> Um, >> you know, >> I I help with CDs, right?
>> So, tell me what you do with those.
I do. Um I help look for CDs and see if they're in there.
>> So when people donate CDs, you open up all the cases. Yeah. Make sure they're there.
>> Yes.
>> Awesome.
Um and how about what did you do there last year that you got an award for?
They're not gonna believe it. Huh?
>> I know. No, probably not.
>> You have to tell them though so they can not believe it.
>> Okay. I got an award for for putting up two Christmas trees.
>> So, you got to help decorate all the trees, huh?
>> Yes.
>> And And what time of year is like your all-time favorite?
Christmas, of course.
>> Christmas. Um, hey, Matthew. Grandma just popped on to watch you and said, "Hooray." Hi, Matthew. She made a comment on the fe on the Facebook.
>> Oh my gosh.
>> I know. Can you believe it? So, Christmas is your favorite. So, getting to go volunteer at a place where then you got to help put up all the decorations and get the trees ready for them to make the the angel trees, that was pretty cool, huh?
>> Yes.
>> Yeah. What kind of things do you do at St. Vincent to Paul?
>> I help put put together homeless bags for people.
>> Yep. So, what kind of things do you put in bags?
>> Toiletry bags.
>> Yep. You help with the toiletry bags.
Then do you get to help hand them out, too?
>> Yes.
>> Do you uh work with some pretty amazing people at those places?
>> Um, heck I do.
>> Heck yeah, you do. Do you want to shout out some of their names? What are who are some of those people that you really like to work with so you can appreciate them?
>> Um, >> what are some of the names of the fantastic people you volunteer with at St. Vincent to Paul?
>> Mr. Barry, Miss Amarie, and everybody.
>> Awesome. What about at uh Salvation Army? Who are the great people you work with there? I work with Ashley.
>> Ashley, she helps you out a lot, huh?
>> She does.
>> And you help her out a lot. It's a pretty good arrangement, huh?
>> Yeah.
>> Yeah, I know. Who else uh in our community? Uh where do you live, by the way?
>> Where do you live?
>> We live in Florida, don't we?
>> We do live in Florida, don't we? What uh what city do we live in? What area? live in Palm Bay.
>> Palm Bay. Yep. It's right by Melbourne.
Um who where what other places? So we lived in Arizona before, didn't we?
>> Yes.
>> For a long time. And that and that's where you were born. And then we moved to Florida about four years ago. So when you move, you kind of have to start all over again, huh? Make new friends, find new people in the community.
>> Yes.
>> That's kind of a lot of work. But you've made some pretty cool friends, huh?
>> Oh, yes.
>> You want to How about we uh How about you talk about your friends that you made at Walmart and how cool they are?
>> Oh, >> I know.
>> Let's talk about them. This is a great chance for us to be able to like tell those people in your community how awesome it's been.
Who's at Walmart that you go see?
>> Mr. Mike. Mr. Mike, what does he do at Walmart?
>> He builds bikes.
>> Yep. He puts all the bikes together there. Do you go and visit him like every week?
>> Every single week.
>> Every single week you go with grandma and do all this cool stuff, huh?
>> Right.
>> Who where else do you go every single week?
>> Where else?
>> What do you do on Tuesdays?
>> Henry.
Henry's? What is Henry's?
>> It's a Cuban restaurant.
>> You go to Henry's every Tuesday. What do you do there?
>> I do a dance party.
>> You do a dance party with who?
>> With everyone. Huh?
>> With everyone.
Yeah. Uh, so who are some people there?
What are some of their names so we can shout them out?
>> I know. Um, Henry and Denasi.
>> Yep.
>> Right.
>> Yep. And they make sure you there's the food there that you love and that you can eat because you've got some food allergies, huh?
>> Yeah.
>> Yep. Hey, Matthew. Miss Bethany said that we did a she made a rhyme for us in the chat. Mr. Mike who loves to build bikes.
>> Oh, >> no. Way to go, Bethany.
>> I know. That was a good one.
Well, what else are you up to?
>> Anything exciting?
>> I don't know.
>> I don't know. Are you distracted?
>> Oh, >> I don't know.
>> How's Miss Megan doing?
>> Miss Megan is not here on this couch.
This is Miss Paola. Hi. Who you've not met yet. Laura's over there.
Hi, Matthew.
>> Matthew uh Paola lives in Miami. Laura is moving to St. Cloud.
>> No way.
>> Can you believe it?
>> She's gonna live uh she's going to live so close to us. It's awesome.
>> Oh my god.
>> Can you believe it? I know.
>> Super cool. So, so Matthew, what's your favorite um dish at the Cuban restaurant? Cuz I live in Miami and it's like 90% Cubans over there, so we have a lot of restaurants.
>> Oh, no way.
>> Yes.
What do you like to eat there?
>> What's your favorite?
>> Yellow rice.
>> Yellow rice.
>> Yep.
>> Do you like the beans?
That's what you have, right? Yellow rice and black beans.
>> More rice. Yum.
>> More rice.
>> That's my favorite there. Yum.
>> So, Matthew, I'm gonna Matthew. Hey, it's Joel. Hi.
>> Um, I uh I'm gonna ask you a question that Bethany actually asked in the chat.
Uh, what's it like to have a mom who works for the William Syndrome Association and helps so many people?
>> I'm so excited. I don't know.
>> Yeah, >> the best.
>> That's fair. That's fair.
>> It's true.
>> Um, well, I I mean I I have that silly little video if we want to watch that. I we will wrap up with Matthew and then we can play the video. Matthew's not such a fan. He's not such a fan of videos sometimes. So, >> okay.
>> Matteo, anything else you want to say?
>> Can I stay on?
>> We're going to show a video.
>> I can do it.
>> Got it.
How about we say we say goodbye for now and then maybe if we have time we can chat a little more later.
All right.
>> Yes.
>> I appreciate you hopping on. It was very great to see you. I'll see you on Monday after I drop everybody at the airport.
Well, when you get home from grandma's, I'll see you.
All right.
Thanks for coming on.
>> You're welcome.
>> It's a power hour. Tell every tell everybody their donations are doubled until six o'clock.
>> Power hour.
>> There you go. It's a power hour. All right, Matthew. We'll see you later.
See you.
>> Bye.
>> Bye.
>> Bye.
>> Oh, I cut him off there. Okay. We have a little Yeah, we had a little bit of a delay there. Probably because I have like 14 things running and open right now.
>> It's like me on Zoom.
>> Uh yeah, I'm out of here.
>> But we get to when we try to say goodbye to John, we get the good and that's uh that's all we uh >> I pull that trigger to end meetings.
>> See you.
>> All right. Well, let's uh Okay, so here's what's going to happen. Um, also I'm trying to understand why we suddenly have a delay, which is not fun. Um, >> here here's a here's a situation.
While you're figuring that out, we uh have our board member, Aaron Lombard, who also donated $500 during this power hour, which turns it into $1,000.
>> Awesome. Well, I mean, I'll jump in the pool multiple times maybe, but uh >> I Thank you, Aaron.
>> Yeah. And so, so that will happen uh in a couple hours when uh when JC uh and um Christy >> the cooks are um safe and at home.
>> He really needs to get dry and then jump >> back to jump in and get, you know, or >> or Okay, here's here's um here's a proposal. a good stewardship of the donor money.
>> So, we're doing we're going to do uh >> someone has joined but without uh and not >> No, it's Matthew again.
>> Um so, uh it's um here's what we are.
So, we're at an Airbnb in uh in lovely Orlando and there is like a public area that has a lazy river, that has another pool, that has a whole bunch of people.
So, maybe I take the mobile command unit, which is just his phone, >> which is just my phone.
>> Makes it sound like he has his tank.
>> No, just news.
>> Just a phone.
>> Yeah, like anchor man. Uh, but maybe I go to uh maybe I go over to the uh the public area and maybe I float down float down the lazy river while broadcasting >> while pies are being thrown >> and and if people want to come and throw things at me, they certainly can.
>> Uh uh we we'll figure that out for tomorrow. Uh, but for now, Joel's gonna be jumping in.
>> Thank you, Aaron.
>> Aaron, if you have a different request for Joel, we can we will >> he'll do anything.
Hey, yeah, I I mean, if it means people are giving to the WSA, then I am here for it, right?
>> Um, okay. So, here's uh what I did while all of that was going on.
Uh we are going to put the tests of AI.
Well, we're going to test AI, I guess, is let me let me use proper grammar. Um we're going to test AI and see how well it took the um >> Williams syndrome is a rare neurodedevelopmental >> Nope. Okay. We're going to see how well it took a pamphlet written uh about William Syndrome on uh written by one of our guests tomorrow on the 100th episode of the Stare Eye podcast. Um and his name is uh um I have it here and it is Camo. Uh you see Dr. Camo.
Um where is it?
uh Zabios.
I might hopefully I'm pronouncing that even slightly close. Um but he will be joining us along with Dr. Mo Helgrren to talk about uh to talk about their studies in rare uh rare diseases and syndromes. But um uh so he had written this short pamphlet and I asked one of my programs that I have on excuse me on my computer. Hey turn this pamphlet into a video about William syndrome. So we're going to see al together for the very very first time. Hopefully nothing offensive happens and we are going to see if the feed dies suddenly it's just because something bad happened and I'm now looking for a new job.
>> So let yeah let's >> tragedy >> yeah let's uh go ahead and see how this works. Here we go. Williams syndrome is a rare neurodedevelopmental disorder caused by a micro deletion on chromosome 7q11.23.
It affects approximately 1 in7,500 to 10,000 live births and occurs equally across sexes and ethnicities. The deletion removes around 26 to 28 genes with the loss of the elastin gene being primarily responsible for the cardiovascular features of the condition.
The pathophysiology of William syndrome stems from haplo insufficiency of multiple genes within the deleted region. Loss of the elastin gene leads to arterial narrowing most notably supra valalvular aortic stenosis.
Loss of LMK1 and other genes in the region contributes to the characteristic cognitive profile. A striking contrast between strong verbal and social abilities and significant difficulties with visual spatial tasks.
Clinically, William syndrome presents across multiple body systems.
Cranioacial features include a broad forehead, wide mouth, full lips, and a flat nasal bridge, often described as an elf appearance. Cardiovascular involvement is present in up to 80% of individuals with supervalular aortic stenosis being the most common finding.
Children with William syndrome are typically hypersocial, overly friendly, and highly verbal, yet struggle with spatial reasoning and adaptive functioning. Hypercalcemia, joint laxity, and renal anomalies are also frequently observed.
Diagnosing Williams syndrome requires a high index of suspicion. Clinicians should consider it in any child presenting with the classic facial features, congenital heart disease, particularly super valvular aortic stenosis, developmental delay, or an unusually gregarious personality.
Standard karaotyping will miss Williams syndrome as the deletion is too small to detect.
The preferred tests are chromosomal microarray or fish analysis targeting the 7Q123 region. A common pitfall is attributing symptoms to isolated cardiac disease or autism spectrum disorder without further genetic workup.
Management of William syndrome is multiddisiplinary and lifelong.
Cardiovascular disease is the leading cause of morbidity and requires regular monitoring and potential surgical intervention. Hypercalcemia should be managed with dietary restriction of vitamin D and calcium in infancy.
Developmental, speech, and occupational therapies are essential for optimizing functional outcomes. Renal ultrasound, opthalmologic evaluation, and aologic testing are part of routine surveillance. As individuals age, attention turns to hypertension, diabetes, and psychological well-being.
The long-term prognosis varies. Most individuals with Williams syndrome require lifelong support and are unlikely to live fully independently.
Yet many lead meaningful, socially rich lives.
>> Cardiovascular complications remain the primary driver of reduced life expectancy. With early intervention and coordinated care, outcomes have improved significantly in recent decades.
>> The journey to diagnosis is rarely straightforward. Families often wait years before receiving a confirmed diagnosis, navigating multiple specialists without a unifying explanation.
This delay can cause significant emotional distress and delay access to appropriate therapies and support.
>> Raising awareness among primary care providers and pediatricians is critical.
>> The distinctive social and behavioral profile of William syndrome. Extreme friendliness paired with anxiety and learning challenges is often misunderstood or misattributed. A number of organizations support individuals with William syndrome and their families.
>> Do we get listed? The William Syndrome Association provides advocacy, research funding, and community connections. The Canadian Association for William Syndrome specific resources.
>> Clinicians can access genetic counseling referrals, multidisciplinary care pathways, and peer-reviewed literature through major academic medical centers and rare disease networks.
Online communities offer peer support and help families navigate the diagnostic and therapeutic journey.
Oh, yeah. Pim. Thank you, Pim. They can hear us. Yeah. All right. Okay. So, that was it. Apparently, that was uh silly fun. Um, and it wasn't horribly offensive.
>> What grade do you give it?
>> Uh, I give it a I don't know. I give it a C. What do you >> C++? B minus. Yeah.
>> Well, the visuals were were were not existent. I mean, as a video, it wasn't good, but I'm talking about the accuracy of it.
>> The accuracy of the information. Yes. I' I'd give that it, you know.
>> C plus. Yeah.
>> Um, >> how about you guys? Any other grades?
>> I don't know, but we have one more minute left in our power hour.
>> Indeed. Indeed, indeed.
Um, all right. And then we will be joined by Dr. Carolyn Shyver, who um very excited for all of you to meet and um yeah, it's going to be uh we're going to hear all about. So, Pim, I hope we didn't say anything. Uh I don't think we said anything offensive.
Um I think we all went under the assumption that we could sort of be heard, but uh yeah. Anyway, uh and now, uh so we have reached the 6 PM hour and what do y'all say we do a Well, I know I got to quick upload the graphic here and then we can do a thermometer check.
Thermometer check.
Uh, unfortunately I do not have uh once again I do not have a drum roll.
All right, here we go. Thermometer check.
And we are sitting at Oh, there goes >> $40,922.
>> Heading in the right direction. Heading in. Yes. Yes, we didn't. We didn't.
Leslie, no bit and lose money. Um, so that's that is good. Uh, let's bring in our uh our next amazing guest. Um, Dr. Carolyn Shyver from the is it is it University of Niagara or Niagara University?
>> Niagara University.
>> Niagara University. That's good. I was testing you and you passed.
>> Thank you.
>> How are you? How are you doing? I'm doing well. How's everybody there?
>> Hanging in there with this last hour. Um I believe I have uh uh lost even more hair. Um but uh but yeah, we're uh we're we're doing we're doing the things.
>> Excellent.
>> Um so Carolyn, you uh we actually have a couple things that we get to talk to you about.
>> Wonderful. Um, you have uh you have a new research study. We'd love to hear more about uh the the research study that you were doing um at Niagara University. And um we'd love to hear about I see I would I say we and I'm just assuming they're all with me. They could be like I don't >> we are this no interest in any of this.
Um but uh and then like you you do some uh you know we had Reinie Zitimemer and her brother Stuart on uh earlier and you um I know that you do some work with uh with siblings and and and um and reach re reaching out to different to to siblings and um and then of course you are on the Buffalo Convention Committee uh and yes very excited. So, let's start there. How uh how excited are you for the Buffalo Convention? How are things going? Um just uh g give us give us the uh the Shivers perspective.
>> I am so excited genuinely like I cannot stop picturing getting to see my friends. Like one of the one of the events that I'm going to be working is the Canal Side event and I'm going to be just helping sell some of our some of our tickets there for some of the food options. And genuinely I keep imagining like sitting at this folding table and having my friends that I know come up and buy tickets and I get to see them for the first time in a year or several years and I I it just makes me happy every time. So, I am so excited. I will also be uh running some sibling programming during a few of the days, which I'm always excited to get to do, get to talk to some of these siblings and get their perspective and just continue to help them feel included. So, personally, I am ecstatic.
And Joel, I know we talked about this before it. I cannot wait for people to come to Buffalo because they have the best bakery I have ever encountered outside of Europe. It is called Butterblock. It is on the west side. And I I'm going to tell everybody I'm telling you anybody I see at this convention and be like, "You need to go.
You need to go to this bakery. It's a teeny tiny little bakery. I go there every week." So, I am excited for all of that. In terms of planning, we have a spectacular planning committee. I'm I'm the least effective person on this.
>> All right. Well, thanks for joining us then. Uh >> no, I'm not true. That's it is a spectacular committee. That is the truth.
>> Yes. Yes. the I mean these women have so many connections and they know so many people and and it's such a good combination of people with different skill sets and different ins. So I I think it's such a magnificent conglomeration of individuals and we're just going to have a really amazing convention.
>> That's awesome. Uh yeah, we we second that. We concur wholeheartedly. Um, it has been uh it's been super fun. It's been uh exciting to work with everybody in Buffalo. Uh from including the people from the uh Buffalo tourism uh >> though I do have to say I feel like they've failed us a bit because we have not been to that bakery. So I'm sending them email asking what is going I will say whatever bakery they brought in this the last time we were there. Those little heart cookies.
>> Um but let's give a shot. Butterblock you said is >> Butterblock. Yes.
>> Butterblock. Okay. So um >> are they open on Sundays?
>> They are 100% open on Sundays. I literally I go every Sunday morning and I get three to six pastries and that's how I motivate myself to do my grade eight for my students every week.
>> I love it. Three to six pastries. Could you when you go tomorrow because tomorrow is of course Sunday, >> correct? If when you go tomorrow, could you say, you know, we have a giant uh we have a giant convention coming and we uh we would like you to uh be part of it and and and we and say, you know, obviously if they want to be a sponsor and whatever, but if they just want to give the staff and volunteers cookies, they >> uh or or various pastry items.
>> Delicious.
>> Um >> I'll ask them tomorrow morning.
>> Oh my go Yeah. What is your very favorite pastry that they make?
>> That's such a great question. Um so they I I have to answer with two questions because there's a sweet and there's a savory. Sunday mornings they make what's called a bio bomb. So it's a it's a big round bio ring with egg and bacon and bashamel and cheese in the middle of it. So it's it's like a breakfast handheld breakfast. And then they do seasonal fruit danishes. So this absolutely mindblowing laminated dough like croissant dough in a little square and then they change the filling about every six weeks. So, this past month they had rhubarb cheesecake filling with a nice little um brown butter sugar crumble topping on it. It's so good. They um they'll have like wild berry. They'll like orange chocolate. They did a mojito once with like lime and mint Danish.
That one was one of my favorites. I just I mean I know I'm supposed to be talking ABOUT WILLIAM CINDERMAN.
WE ARE NOW THE Butterblock Association.
>> Well, on on Sunday, uh, July 5th or Yes, we will probably be showing up. So, >> yes, because that's a work day for us.
So, we're going to need four or five pastry items to get us through uh working on. And Brios, >> Brios Bomb, of course, was my dancer name when I was putting myself through college.
Um, the Brios Bomb.
>> The Brios Kabomb. That's what they That was my dancer name.
>> Um, and uh, All right. So, um, well, I I mean, now I I I almost don't want to talk about anything else, >> right?
>> Has the pastries up on her computer screen.
>> It's very distracting.
>> And I mean, >> delicious.
>> Just looks so happy for Brios Bomb and Joel.
>> Yeah. Sadly. Well, I mean, at least it was a younger picture of me when I had hair.
>> Um, >> but uh the um bio uh no, what am I saying? Uh William syndrome. That's right. William, >> the convention and things. Uh so you mentioned it. You you do a lot of work with siblings. Um, can you talk a little bit more about that and and the the relationship uh in in a dis in any disability community uh between the uh in in your experience between the people uh who have what whatever disability it is that they um that they are living with and what uh what that uh relationship with their sibling uh often looks like or what what you've what you've observed over the years.
>> Yes. So, I will tell you the siblings disability is just one of many factors.
You know, we we all know that among non-disabled siblings, some get along really well, some don't get along really well. Like there there are so many factors that go into the sibling relationship.
And what we have found and what we're continuing to look at, which I'll I'll talk about in just a minute, is how well is the family supported and included overall?
Because if the family members, the siblings included, have to sort of constantly adjust their lives and there are places that they can't go and the sibling can't be at this certain school because the teachers and the staff don't provide what they need and you know they they can't get on planes to go to vacation because the planes aren't accessible, things like that. Then the siblings disability becomes a bigger part of the family's life.
But if there are proper supports, if there are proper accommodations, then the siblings, disabled and non-disabled, have more of a chance to just have the kind of relationship that they would have otherwise to, you know, be irritated with each other or to tease each other, um to to know what the siblings like and to get them good birthday presents and things like that.
So, it's there's there's no such thing as a universal sibling relationship. You know, you were all talking about what grade you would give that that video that I came in at the end of and yeah, you know, clinically and they talked about the genes and that's that's all valid. That's all scientific. But there's so much variability. There is so much variability. So saying that siblings of people with William syndrome or siblings of people with other disabilities have any one thing in common is no more accurate than saying, you know, siblings of sisters versus siblings of brothers have any one thing in common. It's just too much too much change that's possible.
>> Yeah. Yeah. Absolutely. Um and so that so then a like as the sibling as the as both siblings grow. Um and like you said caveat all of this with obviously uh every sibling relationship is um sorry pim. Oh love you pim. uh in the comments. Uh it's um uh they're talking they're they're promoting other uh elements of the the the the WSA which is great and it just distracted me because also I'm just like paper bag paper bank um and um but the uh so as the siblings get older you know as it as that evolves you know you're talking about when you know when there are accommodate especially it sounds like like when accommodations aren't available for the person with um with a disability then the person's disability becomes a greater factor in that relationship. Um I I mean how do I phrase this? It has to um it feels like there's there's you know over the last 30 years there's been a you know greater movement towards accessibility.
Um, have you have you seen have you noticed any sort of uh any correlation to you know like that there where people where because there's some things that are more accessible that maybe you're seeing stronger bonds or uh less um less impediments to bonding maybe or or anything like that.
I I'm I'm this is a really muddled question. And I hope you're sort of remotely uh in the ballpark of where I'm going.
>> Um I'll I'll I'll try. I think I I get what you're saying. And you're absolutely right.
>> Here's what I Here's what I'll say.
Whatever you think I'm asking, that's what I'm asking.
>> Beautiful. Yes, those are my favorite kind of questions. So it yes we absolutely are especially since the passage of the ADA we are seeing you know more more recognition more inclusion um more just movements for integration and I will say we are we are still at the beginning of that we're still seeing a lot of oh we need to be nice to people with disabilities, which is true.
And being sort of charitably nice to people is not the same thing as treated as fully human.
So it's when it comes to the sibling relationship, I tell people I tell my students that having a family member with a disability doesn't magically cure you of the sort of society that we all grow up in. like having a family member with disability doesn't automatically erase all of the anti- disability views that we grow up with. That people with disabilities are less capable that people with disabilities just don't belong in all the same places as non-disabled people. So when you are a sibling or a parent in addition to loving your family member and you know wanting the best for them, you kind of have to unlearn all of these things that that you've learned your entire life. So yeah, it's we're seeing some of these movements and we're definitely seeing >> more siblings getting involved and sort of not uh not feeling shame maybe for for having a sibling with a disability, especially something like Williams syndrome that can be a visible disability.
And from my perspective, always from my perspective, we're not there yet. like there's still so much so much work to do.
>> Oh yeah, absolutely. We're nowhere near and if anything there's been efforts to backslide. Um >> yeah, but we digress. Um you uh some you you're we're being joined in the comments by uh some people who know you and love you very much.
>> I know. I'm looking at them and I'm so excited to see you all. I mean I haven't seen in years. McKenzie and Josh. Uh, I just got to see last year. Toby, I don't remember what year we had Toby at camp, but yeah.
>> Um, yeah. So, let's let's talk a little bit about ACM Lifting Lives Camp. Um, yeah. Oh, you're even rocking the ACM Lifting Lives shirt. Uh, so like so how did you get involved? Maybe maybe if you wouldn't mind just tell people a little bit about what ACM lifting like we've talked a little bit about camp WSA with our kids in their jeans. We've talked a little bit about camp blue skies with uh with um uh the adult camp if you could just talk a little bit about what ACM lifting lives camp is and and John stepped away and John could also speak on it but in and if he comes back great but you you've been involved uh with it heavily. uh tell people a little bit about what what ACM Lifting Lives Camp is.
>> Yes. So ACM Lifting Lives Camp is a music camp that's hosted for a week in Nashville, Tennessee, uh at Vanderbilt University. It was started now 21 years ago by Dr. Elizabeth Dykins and Elizabeth Roof, two of my favorite people in the entire world. and they wanted to develop more longitudinal research for people with Williams syndrome. So that first camp, I think they brought 10 individuals including Seth and Clancy. Um, and it has just grown since then. And since I wanted, I want to say 2011, 2010 or 2011, the Academy of Country Music, the ACM, came on board as our sponsor through their lifting lives division, which is charitable arm of the Academy of Country Music. So now every year uh not this year unfortunately we bring uh 30 individuals with William syndrome to Nashville for a week where they get to write their own song. So a brand new song, brand new music, brand new lyrics, and they rehearse it so much. We spend so much time rehearsing with these campers. And then they get to go to a real Nashville music studio and record this song. And then at the end of the week, they go to the world famous Grand Old Opry and they perform live on stage in front of hundreds of audience members and to millions of people listening on the radio worldwide.
Now, in the midst of all of that, we are conducting research. We're doing surveys. We're doing uh different studies. Sometimes we do uh EEG or MRI, so more of the neurological measurements. And we're really working with the campers to develop skills and um independence. And we just we have a blast. It is the most exhausting and exhilarating week of the year.
>> Yeah, it's it's it always I mean it's it's how John got involved with the community. It's, you know, it's the the stories that come out of it, the songs that come out of it, >> uh, are are really really tremendous.
And, um, yeah. Um, I had a brilliant Oh, yeah. So, uh, we recently had Dr. Dykins and Dr. Roof on the Sorry podcast. Uh, and and it was great to hear them kind of tell the story of how it came about and um how sometimes being a pest helps you get the thing and it helps you, you know, be able to do the thing and it turns into this great wonderful thing.
Uh, so and and then uh and if if people want to go back and have a little fun uh the episode where uh Dr. Shivers was on.
Uh, and to see Brendan when you when you when you said, "Well, Brendan, you and I actually know each other." And to have Brendan's, you know, Brendan recall and and the look on Brendan's face when he put together >> uh who you know that Oh, yeah. That's right. You know, when we That was That was great. And that was uh >> he was an original camper.
>> Yep.
>> Yes.
>> Yep. He was >> Ben Ma.
>> Yep. That was uh so yeah, the ACM lifting lives camp is uh yeah, that's a pretty that's a pretty special camp and I I'm I'm confident I'm sure it'll be back next year and um yeah, and hopefully hopefully it's something that you know I mean John's right there uh and he works for the WSA, but I'm just saying maybe maybe uh John has to get sent somewhere to do some other job part of his job and old Joel has to come over Nashville.
>> Everybody else has come to Nashville.
Joe, you come on in.
>> Um, so some of the things that you were talking about back with the siblings, etc., uh dovtales nicely into the research that you've been doing as of late and I remember you when we were on a site visit and we had a convention committee meeting. You you talked a little bit about this and um been very excited uh to for for you for the for you to be able to launch for the the launching of uh this this research study. Can you tell people a little bit about it? Uh, it's um I I I'm fascinated by it. I think it's going to be u I'm I'm excited for you to get all the data and and to see what you know what comes of it. But te tell people a little bit about the um the study that that frankly just launched and you can find it on our website too. Yeah.
>> Yes. Yes. So, I and some colleagues down at the University of Alabama are working on developing what we're calling a a measure of parallel experienced abbleism. So we we know and we already talked about how family members even if they don't have a disability they can experience some of the exclusion some of the discrimination against their family member with William syndrome or their family member with another disability and we don't measure that in research.
When we do family research we ask what is your family member's disability? What are their symptoms? Um maybe especially if it's a person with a developmental disability, we ask about quote unquote behavior problems. It's all sort of very internalized like oh tell us tell us how much is wrong quote unquote with your family member which is discriminatory in and of itself. So we wanted to develop a measure not just of services, not just of oh do you have access to the therapists that you need, but really globally how does society treat you?
What is it like for you existing in a society that is not made for disabled individuals? So we worked with a bunch of individuals, a bunch of family members of people with all sorts of disabilities, physical disabilities, intellectual disabilities, psychiatric disabilities, disabilities they've had their whole lives, disabilities they maybe acquired later in life through accident or through degenerative conditions. And we came up with 39 questions. So a 39 question survey that now we are in the process of testing. So do these questions feel relevant to your family? Are these things that match your experience? And the hope is that we can make what is called a psychometrically valid measure. That means that all of the scientists say yes this behaves the way we expect it to behave. And then we can start actually doing later research. So all of those surveys that you all get advertisements for and looking at well-being and looking at change over time and looking at transition periods that now we can include a measure of again what the rest of the world is doing to you and how that relates to family members well-being and growth and development.
as people without disabilities who love a family member with disabilities.
>> So if if I'm understanding you and obviously there's a greater than average chance that I'm not understanding correctly. Um but it sounds like the this part of the study or this where we're at now is sort of questioning the questions.
>> Yes.
>> Okay. I'll see you guys later. I got this right. I got it right. Um, hold on.
Uh, no. So you're you're so you're developing the methodology and in order to develop the methodology you have to test the questions and then once you test the questions you'll be able to ask ask the better you know ask better questions or you'll find out what is working and what gets gives you um gives you data whether it's you know certainly not data that you you don't want just the data that matches what you're hoping to find. It's just, you know, and in this case, like you said, it's not really that you're looking to prove something. It's just you're looking to create a scale.
>> Yes.
>> Yes. We are looking to create a scale that we can get the sort of official uh you know like like USDA choice stamp on it like yes, >> THIS IS PRIME ABLEISM, >> prime psychology measure and methodology. So then other people who do this work like Dr. Dykens, like Megan Burke can can use this survey and say and put it in their own research. So all of the amazing people that do family research can say, "Oh, now we have these questions that are just ready and available and we can include them in our research as well."
>> Fantastic. Um, well I And and this is open to anybody, right?
>> Anybody 18 or above, >> right? Anybody 18 or above. Yeah.
>> Anybody 18 who has a firstderee relative. So sibling, parent, spouse, or child with any kind of disability.
>> Okay. So this is uh this is at this point this is not necessarily for individuals with the with a disability.
This is for those connected to them.
>> Correct.
>> Um well, that's uh that's tremendous. I um I'm fortunate enough fortunate to serve on the Minnesota Governor's Council for Developmental Disability and we have a meeting next Wednesday and I'm very excited to tell people and give them the link uh to go because this is something that we talk about all the time in the uh in the governor's uh council. So, um I I love it. Um, and I've been uh boguarding this conversation. Um, anyone else have I mean I'm happy to continue to boguard it. I just I like Dr. Shyver so much.
Um, and we've now met a grand total of like three times.
>> Yes.
>> Um, yeah. Uh, so um, so when uh Yeah. So the so so when you you're questioning the questions >> Yes. Um I just because I'm also fascinated because also when we when we talked and actually when I uh when we talked on the podcast with uh Dr. Dutkins and Dr. Rof, they even mentioned it and we're talking about studies and talking about everything. It it's and we get people asking us like, "Oh, you got to do research into this and you know and and you know, when are we going to hear about all the the when are we going to finally get some information about whether it's sudden cardiac death or whatever uh uh concerns, you know, the concerns regarding Williams syndrome and some of the complications from it.
Um but you I remember vividly you talking about uh you know yes we we are researching it but it takes time.
>> Yeah.
>> Yeah. So >> yeah, can can you just maybe share a little bit about more about like what I mean where that's the singles if someone wouldn't mind uh you know getting uh getting our f Oh, we have future guests and they're here and in person. Um but the um um but the uh just just the process that it goes like you're in the very like this is the beginning. This is maybe what step three or something of a multi-step process just to uh just to start gathering the data.
>> Yes. So, you know, Joel, you said earlier that okay, this current project is about the family members. It's not about the people with disabilities themselves. We've already done that part.
>> Okay. Three years ago, I started collecting data, interviews with people again with a variety of disabilities with neurode divergence, physical disabilities, psychiatric disabilities to develop a measure of personal experienced abbleism. Okay. Three years ago that data collection started.
>> I just got what we call in in the academic sphere a revise and resubmit.
So, I submitted the journal article for publication, which is the step that you need to get everybody else to believe in the validity of your research.
>> Okay?
>> So, you send that out and I sent out the article, you know, 35 pages that I had written up and put together all the results >> and then you have external reviewers. So other people in academic fields, they read over it and they say, "Oh, well, we need to know more about this and I don't I'm not sure what this means." And then you make edits. So if I am fortunate enough to get that paper published, that's going to be at least another 3 months. So more than three years past the starting date of this. And then it's it becomes my job to share that information because you know how many academic journals do you have subscriptions to Joel?
>> I mean it depends.
>> All of them.
>> I mean yeah there all the journals.
>> It depends to me. It depends >> reading one before we started.
>> Yeah. It depends on if it's if it's beach season or not.
You know, there's no perfect there's there's no better reading at the beach.
>> Yes.
>> Than the New England Journal of Medicine. Um >> or uh you know >> Yes. Yeah. You're absolutely right. New England Journal of Medicine is good beach read. Jamama Journal of the American Medical Association is a little that's >> more that's more curl up in front of a cozy fire.
>> Yes.
>> Yeah. you better have your wedding ring on because the women will just come flocking over.
There's nothing there's nothing they love more. So, so then I I have to tell people and and I have to, you know, search to put out press releases so that people actually know what the results of this research are. not just other researchers that I hope will use these measures we worked so hard on but individuals and their families so they know we are talking about things that concern them like we are working on this so this current family study that we're doing it is likely not going to be finished and by finished I mean published for about another two years.
>> Wow. I I mean, yeah, it's just I mean, it it's that's the length of time it takes.
>> Um, so you you were talking about in that first that first step, the individualized uh experiences of abbleism.
>> Um, so how you said it was like 30 some pages. How much of it was written by AI and how many emojis did you use?
>> Great question. ABSOLUTELY ZERO WAS WRITTEN BY AI. I am I am fiercely fiercely anti-generative AI. I know that that AI can have its its benefits in certain situations.
I don't want AI stealing my work to teach other people. So why would I use it when it's based on stolen other people's work? Uh so zero AI in terms of emojis in the final product.
Zero.
while I'm working on it and while I'm notating what particular paragraphs I'm really excited about. Uh, you know, sometimes when you write, you just get a phrase and you're like, "Oo, that was good. Good job, Dr. Shyver. Good good academic working."
>> Um, okay. Well, I'm going to throw this out there. Much like I threw out like if we raise if somebody gives a thousand dollar donation, I will jump into the pool. Um, I uh I will I will give you uh I will give you a crisp dollar bill if you can work in a banana emoji into the final uh final version of the paper.
>> Okay.
>> I would I would think if you're going to have an emoji, it would be of one of those sweets at the bakery that you're talking >> Oh, there you go. the the do that. I'll get back to the food.
>> A song emoji, >> you know.
or uh yeah this able um perceived abbleism study or uh family abbleism study sponsored by yeah >> sponsored by man like you know I'm already thinking John they they do have small piece that they allow in published papers of acknowledgements kind of like the the thank you at the beginning of novels so so I can say like I would like to acknowledge the LAMINATED DOUGH PASTRIES FOR MAKING THIS WORK POSSIBLE.
>> OH, please do.
>> Please do because because if anything, if if nothing else, it shows that uh researchers and uh scientists are indeed human.
>> We we are I promise.
>> And and need to function on uh more than just uh motor oil and um and batteries.
>> Is there research? This is a different kind of train of thought, but is there research about siblings uh of of persons with disabilities going into helping professions?
>> Um >> Sean, is this a leading question?
Because this is the very first paper I published out of grad school.
>> No, this is based on my experience interviewing lots and lots of siblings.
>> Wow. Wow. That's I truly so so everybody watching just know that this is not a setup. I did not pay John to ask this question. Um the the very first uh study that I did when I was in grad school was with Julie Taylor who is also at Vanderbilt. Uh she is magnificent. She does a lot of transition and support stuff. and we looked at um predicted involvement in helping professions among siblings of individuals with intellectual disabilities. So we didn't have any sort of diagnosis. These people could have Down syndrome, they could have William syndrome, they could have just global developmental delay. Um, but we found that only siblings, so if it's just you and the the sibling with intellectual disabilities as well as being the older brother or sister as as opposed to the younger brother or sister and being more involved with your your brother or sister with disabilities, your sibling with disabilities was all related to uh more altruistic behavior. So both helping professions and volunteerism.
So it's not necessarily every sibling. Um but it's if you have a good relationship, if you have more contact with your sibling with disabilities, then that is related to more um helping professions and more volunteerism. So more altruism overall.
>> That's I suspected that, but I I've never seen the data. So that's interesting that you're kind of verifying. Uh I did three or four different films. Ang Kaiser from Vanderbilt was in >> couple because she's done a lot of work in that area. Um but Terry Manava and I went around and did a William Syndrome film uh years back and uh yeah it's they're really interesting.
The siblings just t that I've met are just really interesting, wonderful, empathetic people.
>> Yeah.
>> Yeah. I know I'm speaking in generalities, but >> Yes. Yes. And there there are great stories of things that we wouldn't even consider helping professions. So, one of the gentlemen that was affiliated with my previous university worked a lot with people with disabilities, but he was in finance. Like he was he was, you know, made extraordinary amount of money doing banking and personal financial consulting. But he said he went into that because he saw how difficult money management was for his sibling with intellectual disabilities. So most of us wouldn't consider banking a helping profession, but that's why he he did what he did. You know, we have other stories of people who go to beauty school to be to work in salons and be a butician because they know that that sensory experience of getting a haircut can be really challenging for people with developmental disabilities. So, they want to make that a better experience. So even though we, you know, we found the the numbers that we did in this study back in in 2009, >> we almost need to expand our definition of what we consider helping professions.
>> Yeah, that's that's interesting.
>> Yeah.
>> And that's one of the cool things about the folks at Innercents coming out to our convention is >> their their um sensitivity to the to these uh issues that face our population. So >> yes. Yeah. Absolutely. And you know, Morgan has great hair, so >> there is that.
>> Yes, >> it does.
>> Um, well, you have been so generous with your time. Um, but I would be remiss if I didn't, um, ask because I know that once I mention it, uh, people hopefully watching will perk up a little bit. But you, um, you did have, uh, you did make an appearance on Jeopardy. It's uh it's a a defendant.
Uh it was and it was close.
It was close, right?
>> It it was close. I I came in second. I um it was first of all, it was a blast.
Highly recommend. I had a great time on Jeopardy. I was leading at both the first commercial break and at the end of uh regular Jeopardy. So the first round um and the double jeopardy didn't go as well. So I was going into third going into final jeopardy and I got the question right. So I was leading and then I was leading after the second round after the second gentleman gave his answer but then the the final guy the returning champion also got it right >> beating me. What? So, and again, this is just more uh like psychological question like you're sitting there and you know the opening round of Jeopardy has gone pretty good. You're feeling feeling good when you see the subject headings uh of like heroes are are topics for double jeopardy. Um, and like like did you know like did you have a sense of like this these are not like this potentially is is going to be a grind or is it just like you just kind of got to go I have no idea. I I take them one question at a time.
>> There most categories in Jeopardy for me and for a lot of the people that I talked to are sort of like okay like okay I I think I can hang for a few questions on this.
>> There are uh there were a few categories. So there was one category on NFL football teams and I'm like okay I can do this. I I watch football. I can I can name, you know, all all 32 football teams. So, that one I felt pretty good at. There there are a few categories that I know I'm not good at. So, poetry, anything about poets, I'm like, no, this is this is not going to be my thing. I was fortunate enough not to see any of those categories in my game. So, nothing came up that I was sort of immediately recoiling from.
>> Okay. Well, the returning champion's last name wasn't Van Doran, was it?
>> No.
>> Um, that's And so, have uh like have you been watching pop culture Jeopardy? Do you feel like I need to jump back into this? Uh I I have all this K-pop knowledge. Is like is that something that's going on in your head?
>> Oh, I've I've applied for Pop Culture Jeopardy. like the the women on my on my online trivia team were like, "Okay, let's let's get on this." So, >> oh my god, I love it.
>> Yet, if if pop culture Jeopardy keeps going, we absolutely are going to keep applying. Actually, one of the the gentlemen that was there the day I taped Jeopardy, because they tape five episodes in a day, like a week's worth of episodes in a day. So, you called them like your tape day friends. he was on this this past season of Pop Culture Jeopardy. So, I was excited to to get to see him again. So, Oh, yeah.
>> You remember what team he was on?
>> Do you remember what team he was on?
>> He was on um We We Run on Double A.
>> Oh, yeah. Yeah.
>> Yep. I uh I I I have a maybe unhealthy obsession with that show. Uh even though this is the first when last year the first season that it aired my wife and I would watch it and we're like yeah you know maybe kind of like what yours I'm hanging I can hang in with this stuff.
Uh this year there are so many things that are coming out in these questions that I'm like oh um my butt is old.
>> I am an old old man now. This is not made for me anymore. Um, but I will just enjoy I will enjoy the competitive spirit.
>> See, that's the benefit of working in a college setting because some of these things I just learn by osmosis from my students. I'm like, wait a minute, what is that working? What is that? Who is who is this person?
>> Yeah, I work with these guys. So, it's that's you know Yeah, >> you've seen us. This is what's >> Yeah, we're not we're not cool. And that's maybe that's okay. We maybe we don't need to be cool.
>> You are a different kind of cool.
>> WE'RE ROCK WE'RE A DIFFERENT KIND OF COOL.
>> ROCKFORD files are so cool.
>> We're Rockford Files.
>> We watched Columbbo before we jo Thank you so much. Uh I um I you're going to get sick of me by the end of convention. And I know it because I just uh I love having conversations with you and um and it was just fascinating and and um luckily there's been some people here in the comments also have been like this is fascinating stuff and I'm like it because it is I um it's super cool.
So um all right we will see well we'll talk to you I'm sure beforehand but we will see you in just a few weeks at the bakery. We'll meet We'll meet you at the bakery on Sunday morning >> on the 5th.
>> Yes. I can't wait to see everybody in Buffalo. Come join us. It is going to be the best time. So, thank you.
>> So, as of right now, we have like 1350 of your clo of our closest friends registered. So, numbers keep going up today. So, >> beautiful.
>> Yeah. Uh, all right. Well, thank you so much and we will talk to you soon. Uh and um and thank you thank you for stepping up. Thank you for being uh part of this William Syndrome community >> and uh and and we're so lucky to uh now have you and you're stuck with us forever and it's uh we're we're um yeah, we're just we're just so thrilled.
>> I can't wait. Enjoy the rest of the weekend for Williams and I will see you all in Buffalo in July.
>> Sounds great. Bye bye.
>> Thank you.
>> Bye now.
>> Um yeah, uh Pim Pim nailing it. Uh I could say this exact same thing that Pim says, but uh it would take me about 20 minutes. Um but yeah, she the the way she talks about things, it's um it it it's very easily uh very easy to understand, very easy to uh to you know, hey, I was able to track everything going on with that study.
>> So that's that's not nothing. That's um you know, but it it's informative about the the pace of research. And then if you throw in, you know, in biomedical research, for example, the time it takes to get a drug to market is >> 15 years, you know, if it if it happens.
Um, >> it's just there's so many steps involved that uh that it's so complicated that it it's just >> right.
>> It's it's it has to be slow because it has to be safe.
>> Yes. Um well uh I'm I think we can sort of So it's uh 6:50 right now Eastern time. Um we uh we have we still have uh a chaka block show. We have four more uh well almost three little over three more hours yet to go. We are going to be joined um in studio here by the Sindle by uh Sandy and Cameron Synindle um in just a moment. They're downstairs uh enjoying uh Craft Service and the um Extreme.
>> They're in Hair and Makeup now.
>> Yeah, they're they're probably in Hair and Makeup. Um and then we have Ben and Beth uh Cohen uh coming on and then uh and then we'll have a little break. Uh well, yes, I should say. And Robin Peg, rumor has it she is actually going to she's going to join us. So, I sort of feel like let's pivot a little bit and let's see if the singles are willing to come on a little early >> and we'll bring them on and then that way when Robin is ready to come on we can bring her on and we can uh have enough time to talk about the knowledge network. Um, but then of course then later on we'll take a little break and then everyone can come back for the social club after dark which will probably conclude with uh Joel the idiot jumping into a pool with all his clothes on. Um, all right. So, let's So, uh, who wants to go downstairs and um, and ask the singles if they would be we're doing a little on air production meeting >> and uh, at the top of this hour 7 Eastern, we will start another power hour. Oh, indeed. Indeed. It'll be a power hour.
>> Yeah. You're wanting to make a donation, this next hour is a great time to do it.
>> And um let's talk a little bit about what your donations uh go to uh with with the WSA. I mean, we um yes, it does help pay our salaries. Um and ain't none of us getting rich uh working for the WSA, but um we're we're juttery. Boy, where are our are I'm gonna You know what? I'm going to do something real quick here. I'm going to be uh I'm going to just see if coming back like this does anything to help. Um uh All right. Well, um, for those of you once again, for those of you in the chat who are like super excited and are asking to come on and want to come on, uh, we have the social club after dark and that will be the an opportunity today for, um, for people to come on and tell everyone a little bit about themselves and to uh, again share the good word, share the story, share the story of William Syndrome and everything that we have uh, going on. So your donations they um they provide uh uh programs connection research uh those are the those are the big things our website the the vast repository of information that is available on the WSA website all of that uh is that has to be maintained and you know followed up on and and we also all of the um the the the the walks, the connection events, the opportunities for uh connection camp, uh the different types of camps. I mean, you heard Dr. Shyver talk about ACM Lifting Lives Camp. You uh you you heard you've heard us talk a lot about uh about WSA camp and uh we're going to be we've talked about it already and we're going to talk even more about uh Camp Blue Skies in just a moment here.
and um and and the green room.
>> Yep. So that so uh yes, so please please consider donating. Please uh help us out donating uh text WSA to 71777 or you can uh scan this QR code right here. Let's see. Oh no, I went too far.
Went too far in the vertical feed. Went too far in the vertical feed.
>> I don't even know.
>> Okay. because uh Paulo Paulo's got it.
Uh anyway, um you can scan that QR code.
Uh and also when you scan the QR code, um a cool thing happens on our screen.
And so I like to see the cool thing happen on our screen. So if you scan the QR code, that would be uh that would be great.
>> Happened a minute ago. We just saw a donation happen.
>> Yep. Yep. So uh we are super happy to welcome uh Sandy and Cameron Synindle. Y >> our first in studio in >> house. YES, THEY are here. Um so great to to see you both. Um I I'll do a little uh Brendan Lemieux podcast thing.
For those who haven't had it uh who don't who might not know you, um take a few moments and uh introduce yourself to the fine people of the world. My name is Cameron Sindle.
>> And And where do you live?
>> CMI, Florida.
>> Excellent. And are you okay sharing how old you are?
>> Uh 31.
>> And then tell us um I mean I know this, but tell us like what's one of your biggest passions in life?
>> Uh everything.
>> Well, sure.
>> Come on, Cameron. Working helping out the fire department.
>> Yeah. And you've been doing that for years, right?
>> Yes. It's it's it's really good, actually.
>> Awesome.
>> Been busy. We've been busy this year.
>> Well, and uh like too busy like, "Hey, we need to calm down the fires or just like >> really out of control this year. Last year we run more structure fires than any fire department in the country."
>> Wow. I don't know. In the country, >> but in this city.
>> In Yeah. Sure. and North Carolina.
>> Yes. And North Carolina and the mountains.
>> All right. Well, you uh so um you you've heard that. Let's you've heard that people. Let's keep the only you >> structure fires.
>> Only you can prevent nailed it.
>> Prevent >> prevent fires happening by by doing these things at home for your kids and your children. Number one, parents, listen up. Number one, do not play with matches. Do not play with lighters. Do not play with anything that's dangerous. Leave it to the professionals.
>> Yes.
>> You got a number two.
>> You got a number two.
>> If you say if you see something, call us.
>> Great. And you have a third.
>> Uh, >> no. We'll just get going. Two. Listen up, parents. Yeah. If you're on fire, >> stop.
That's right.
>> Don't film it. It is not Tik Tok content or Facebook.
>> Right. That's right. not Instagram worthy.
>> Uh, and Sandy.
>> Hi, I'm Sandy Cindle. I'm Cameron's mom.
Proud to be his mom. He keeps me on my feet. So, yeah, I love it. I love our little group of Williamson family. It's They're just amazing.
>> Um, sorry, I distracted myself because I was literally about to ask. And you've been his mom like his whole life?
>> His whole life. That's like Matthew's saying. You're the best mom I've ever had. That's >> That must be that must be that I hear that all the time. Like >> we suck.
>> We might be five hours into this broadcast.
>> But so so Cameron um I I met you uh for the first time a few years ago.
>> Yes.
>> At Camp Blue Skies.
>> Yes.
tell would you be willing to tell everybody um just a what is Camp Le guys and B why do you love it so much because you keep coming back?
>> Well, camp was for me when I first heard about it. Nobody told me until I was old enough to learn about it. I didn't I didn't have time to go to camp that time, but now I do because I keep coming back for fun and fun fun. That's all I do. There's nothing else I can do.
>> Yeah. Um and and so yeah, so now it's like you you make sure that you have that time available.
>> Um and what uh like what are some of your favorite things that you get to do at camp?
>> I like to go k I like to go kaying. Mhm.
>> Canoeing and doing other things >> like what?
>> Like you like the goats.
>> Like the goats. Yes.
>> Went to the farm.
>> Awesome, isn't it?
>> Yes, it is fun.
>> That farm is uh Yeah, that farm is awesome. And Camp Blue skies uh often will be like around March. Yes.
>> So, it's in very early in the growing season. So, you're you're there and it's, you know, things are just getting going and you know, but they some carrots will still have been been growing and and uh so >> you like to hang out with your friends that you don't get to see very much.
>> Yes, I do.
>> Making new ones.
>> Making new ones.
>> What um like so one of the big things with Camp Blue Skies is uh you know the idea of challenging yourself, trying new maybe trying new things.
>> I tried the n fifth there. It was all right.
>> The new food.
>> Yes, >> they had new food there.
>> Where did you try?
>> We were just there. We just came back from camp. So, >> which camp did you guys go? The same one. We were at I mean, yeah, we were at Twin Twin Lakes. Yeah, Twin Lakes West.
>> West.
>> Um, but that we were there with the teens and the kids.
>> It was all right. I mean, there's new stuff like these curly fries. I like them a lot.
>> I'm sorry.
>> We didn't have >> We didn't get curly fries.
>> You didn't get curly fries Friday.
Naggar, Nick, Emma, if you're watching this at all, we are about to have a discussion about curly fries.
>> Um, Rob, >> but the um, so like of the activities though, like that, what what is an activity that you maybe can't believe that you've done, but you got to do it because of Camp Blue skies.
>> Paint and coloring and the drawing, designing stuff.
>> What about the ziplining?
>> Zip lighting was pretty cool.
did it. You did it.
>> No, I did it last time.
>> You done it and you did the big swing.
You done the giant swing.
>> Um because I know I have I know I have footage of you on um >> on the zip line.
>> Zipline. Yes, it was fun.
That was my first time doing it >> and I and I think >> I think you may have done it the year that um the the it wasn't quite as uh taught as it was supposed to be. Oh yes.
And so you had you had a sort of an extra um >> I thought about it at first because you know safety is more important.
>> It's true.
>> And I thought about it. I was like, "Huh, should I do this?" Cuz because I was like, "Nah, yeah. No, yeah, no. I went and do it anyway." So >> So people Yeah. So people who don't know the zipline at Camp Twin Lakes, uh, which is the host the host site, Camp Twin Lakes is the is the grounds. Um, and then what happens is is Camp Blue Skies, which is an organization that was founded by uh a a dad um who was essentially looking for activities for his adult son with William Syndrome. Uh so he founded camp blue skies and um now it's there they hold multiple camps throughout the year but one week out of the year is a William Syndrome only camp and so everybody is there everybody that is there is with has William syndrome.
Um and camp the camp twin lake site has all sorts of activities. The zipline is this giant structure that you have to you have to climb up many many stairs and you're pretty high up there, right?
>> Yes.
>> Yeah. And then and then you just have to trust. You have to trust and and you you leap off and suddenly you're flying, right?
>> Yes.
>> And um >> Cameron didn't like heights, so I was glad he tried it.
>> Yeah. Yeah. And Yeah. Cameron um Yeah.
stepped up. The the giant swing is is exactly what it sounds like. It's a giant it's a big uh swing on wires and you're the what's what I my favorite part about the giant swing is that if you're not in the giant swing, >> you're on rope duty, which means that you help pull your friend back and until they say stop and they're ready, you know. So then so you're you're playing a part in them getting to do the giant swing. I didn't do the giant swing, but I did the zipline and that was fun.
>> Yeah. Yeah. Um, so, so talk a little bit. Um, so we're gonna pivot a little bit, change slight change of subject. Uh, the your your work with the fire department. Um, how did that, how did you start work? Like was it was it something you've loved as since you were a kid or is this something you're like, "Hey, that looks interesting. let me go, you know, talk to them or or or figure >> Well, I Well, >> do you remember?
>> No.
>> No, I don't.
>> So, we're originally from Virginia. We lived in a small county where all of the fire department is volunteer.
>> Okay.
>> And living in a small town, everybody kind of knows everybody. And so our local fire department in town on Wednesday nights, they're always out there cleaning the trucks, doing the maintenance on the trucks, have fire training. And one of my friends said, "I know Cameron really likes the fire trucks. So why don't you bring him here on Wednesday nights and let him hang out with us and work, you know, do the truck maintenance and washing of the trucks and we'll take him to our training." So that's kind of where it started locally.
Um, >> and then I have my cousins are in the fire department in North Carolina.
They're chiefs. So he started, you know, when we would go visit, he it's like an honorary fireman with them. So >> love it.
>> And he has his own turnout gear. So >> Wow.
>> Awesome.
>> Yeah.
>> It gets really hot.
>> Yeah.
>> What was it like the first time you got all kitted up in your in your turnout gear? Well, not for any fires. I mean, we we we practice. We have to practice before we go in every single call because you don't know what the call can be. You can step into, let's say, this house catch on fire. And we need to get dressed in time. That's on you guys, not on us. Because you're supposed to get dressed when you're supposed to get on the fire engine before it leaves station. because you got to keep going and going and then you come back and then you have to clean the trucks, clean your turnout gear, put in a washing machine and and do all the stuff to it.
>> Yep. Do you ever um do you ever ride out with them to a call?
>> Sometimes. It depends.
>> I mostly mostly I ride with the chief cuz >> that's what he does. The chief is my cousin >> my cousin and we have to do what the you know like we have to make sure everybody's safe >> because we can't we can't just let you go into a scene without without you know telling which call it's going to be you know you don't know what you're walking into.
>> So you've been to a car accident?
>> I've been to a car accident. I've been to car accidents twice.
>> Wow. Wow.
>> And they're scary.
>> Yeah. I bet. I bet. Um, so then you're you're at the So you're practicing.
>> Yes.
>> Which is also a good message. Don't ever, you know, because I know especially some of our young people, they want to uh or like they do something once and they think they're experts at it or they uh or they expect themselves to be experts at it like right out of the gate. It takes practice. All of this stuff it, you know, everything takes practice.
>> Yes. So, the first time you get you you have your turnout gear.
>> Yes.
>> And you put it on.
>> Yes.
>> And did you like look at yourself in the mirror?
>> No.
>> No.
>> No.
>> Uh did you get a picture or anything taken of yourself?
>> No.
>> Uh okay. So, just you're in your brain.
>> Yes.
>> You're in the gear. How how like how did you feel? I feel like if I helped somebody out that day, then I made difference in somebody's life because you can't just do it without yourself.
You know, there's got to be people that doing it too that save people's lives every day. You just >> you just got to realize without them there won't be no fireouses. There won't be no nothing.
>> Right.
>> Right. Um, and so then you spend um Oh, see Matt, you're absolutely right. Like Matt tap dances. And so, um, >> like now or next, >> but when you're done.
>> Sure. Oh my goodness. Sorry. That's great.
>> Well, that's that's shocking. I mean, not shocking, but that's like an attention grabber, I guess. But Matt talking about tap dance, it takes it takes practice and and so um so I love that you talked about that you have you have to practice. You have to practice getting into you have to practice I'm sure you have to practice like how you get on the fire truck.
>> Yes.
>> So that you do it efficiently and quickly. Some fire trucks that we have are brand new and they're really high tech and we have to be careful with those new high-tech fire engines because some of some of the things that you see on a high-tech fire engine can leave you to hurt or even worse.
>> Sure. Sure.
>> So, uh so then you get you take part um in in like the cleaning and uh making sure that everything is ready to go at a moment's notice.
>> Yes. Sometimes we have to check our radios and see how much batteries we got left. If we have enough batteries, we just leave them to charge. Sure.
>> And then somebody will stay at the firehouse while everybody else goes home. Now that's the captain or lieutenant's job to stay and just in case we have to get somebody to stand out there to do the job.
>> And sometimes the fire chief will leave to go somewhere like out of town for a week. somebody will come in and take his place and while he's out of town, she's still contact both for the firehouse and him at the same time.
>> Yeah.
>> So, it's a whole it's a whole community.
Yes. That has to that has to be working together. Yes. In order in order for Well, and to keep people, to keep property, to keep houses and and keep everything safe.
>> Yes. Um, now you're living down here in uh, you know, you live here in the southern United States where there are um, there's been hurricanes and uh, you know, lots of storms and etc. Uh have have you have you had any experience with say like the cleanup efforts after any sort of uh >> um some sometimes down here it's like sometimes I'll go help out the tree people if they need help with certain things like they they sometimes they get confused where they go.
>> Well, sure.
>> And they're not they're not smart where they need to go.
>> Oh, sure. But they might be coming in from out of town or something to help out.
>> They they they um sometimes they spend the night, sometimes they have to go back and then other tree companies will come in and they will set up and start rigging trees down one by one.
>> Yeah. But and what's what's good is that there's someone like you there >> to >> there's other people there that do it, too.
>> Yeah. Yeah. That like you're part of a team of people that are like, "Okay, this is what's first, this is what's second. you know, we're going to head to this, you guys head to this. And so, again, it's it's a whole it's a whole community of people uh working. It's a whole community of people working together to try to help and better the lives of others, not unlike us here at the USA.
>> You It's fun.
>> It's helpers. It's those helper people that make the world go around.
>> That's right.
>> Absolutely. Um someone's talking about uh doing makeup again. boy, you don't want me doing makeup. Uh, and and that, you know, and I would have to have lots and lots and lots of practice >> uh to do uh to successfully not make anyone look like a Picasso painting. Um, but uh so yeah. So, Cam, um I mean I boy I I I mean I I feel like I've known you I mean I have known you for years. Um, but I loved listening to you talk about uh uh the fire department.
What like do you have like a favorite do you have like a favorite truck or a favorite tradition that you guys have at the firehouse? Is there anything um like anything like what gets you excited about when you're when you're there?
>> Uh the tanker truck or the battalion chief vehicle because that's what we use. The battalion chief vehicle is responsible of everybody in the whole entire fire department. Okay. And and what does that look like? Is that just like a car? Like a regular >> like under there's undercover there's there's um home there's like there's like undercover battalion chief vehicles that are tricked out like to the top like >> like some of us will get to take one home and keep it and then sometimes we get to use it a lot.
>> Sure.
>> Nice.
>> And the um the the tanker truck. Uh, I'm I'm I'm sorry. I'm gonna assume that the tanker truck is like that's what's hooking up to the fire hydrants and or have they have water on board?
>> Yes. Some of some of the fire trucks we have at our station. We got a rescue. We got um we got let's see tankers. We got two maybe three tankers there. We got two brand new engines that are coming this year. We already got one >> of trucks. They Pierce or >> There's one of them is E1, but that's old fire truck and we still use it.
>> Okay.
>> Um, we got a new one that just came in.
It's a towing. I don't know how you spell it, but I'm going say a freight international chassis truck because that's what they call them. It's on a freight chassis line and it's a big one.
Some firehouse I've been to, they got Pierce, they got E ones, they got they got other trucks.
>> So you uh so you have the fire departments in uh you say North Carolina.
>> North Carolina.
>> That that's where that's where you have relatives who are chiefs.
>> Yes.
>> Then you do you you hang out down like here at at home here? Do you get to go to the fire department around here at all?
>> Sometimes. It depends what it is. Like if we're doing an event, sometimes I'll go to it because >> all the open houses.
>> I go to old old >> Oh, go ahead.
>> No. Yeah, you got this.
>> Old I go to old open houses a lot and then sometimes I go to meetings.
>> Okay. Okay. So, so you've gotten to take in like different firehouses and different ways that they like to do things.
>> Yes.
>> Yeah. That's really cool. Um, so uh um I was going where I was going with this uh was sorry there was a bleep and I saw we you have our our next guest and all takes a little bleep and Joel's off and going. Um but uh so you've had you've had this opportunity to so so when you're >> because it's more than just putting out fires.
>> Yes.
>> You know fire uh the fire department is often the first on any scene.
>> Yes.
>> Their first at the scene of someone having a heart attack or or a car accident often things like that. Um so the people that you work with the the men and women who are you know who are on the fire department.
>> Yes. Um, do you ever get to talk to them about like the training that they went through, everything that they've done and everything that they continue to do to stay up to date to be able to do the job?
>> Some people have told me they going through like training classes and some of them have been to fire academy >> Oh, sure. Of course, there's that makes perfect sense. Why would there not be fire uh firemies? Um, well, that is I mean that's I I love I love listening to talking you talking about um about fire.
I was about to say I love listening you listening to you talk about fire.
>> Yes.
>> But it it's not it's not fire that we're talking about. Firefighting uh the fire departments, the the ins and outs of what goes into uh being that kind of first responder. And um I think that's awesome. Um, so tell people like as we're wrapping up here because then we have uh uh we're going to be talking with Dr. Robin Peg.
>> Yes.
>> Um, do you know have you met Dr. Peg before?
>> No.
>> No.
>> Um, but uh she she's super cool. You like her? But um >> tell people a little bit about So you've been able to go to Camp Blue Scout.
>> Yes. Um, and you've been we have been able to work together uh to help send you to Camp Blue Skies with scholarships.
>> Um, so I guess what I'm saying is if you could tell people like >> if you have a you know tell people why they should want to come to camp and and if they if they're afraid like if they can't quite afford it then they can reach out to us. Yes, please reach out to the W USA for more information about Camp Blue Skies. Camp Blue Skies rocks.
Absolutely. And yeah, and we want to help people. We want to help if you're an adult with William syndrome and you want to experience camp or you want to try something maybe that you've never tried before. Uh we want to help you get there. So, uh, we are, um, we'll be working with Camp Loose, guys, uh, to to help get the information out there maybe a little earlier to help, um, to help families and individuals with William syndrome make make the decision and figure out how how they can come to camp. So, um, yeah, come hang out, uh, come hang out with me, come hang out with Cameron, uh, come hang out with all of our, uh, all of the cool people. And I would like to do a big shout out to >> do go.
>> I would like to shout out to all the counselors and all the people that make Camp Blue Sky where it is today. Without them, they won't be no camp and the volunteers that come from colleges, if I'm saying it right, what what college?
>> Uh boy, I they it's a couple different colleges, but yeah, it's a whole bunch of nursing students that are in school.
>> I would like to say thank you to them, too.
>> Yeah.
>> Yeah. The volunteers that they get uh out at camp blue loose skies are are pretty fantastic from from students to people who have known uh the cesler Dixer who started the camp uh who've just known them for years who uh who give of their like this is what they do.
They take one week of the their PTO or sometimes two.
>> This is what they do with their their vacation.
>> They get time off and they want to do it. Um they want to spend it.
>> I see that >> at our camp. I think the doctor's on.
>> Yep. And so, um, uh, well, thank you.
Thank you guys so much. I'm so happy that you guys could come here.
>> Cameron, Brendan, Leu shouted you out on there and said, "Hey."
>> Hi.
>> He commented on there.
>> And Brendan Brendan also is planning on being now that he's, uh, going to be done with the board, uh, board of trustees. Brendan will hopefully get to come start coming to camp and doing doing other things with with uh the other adults. Um so, um well, all right.
Well, thank you.
>> Oh my goodness. Thank you so much, buddy. So good to see you.
>> Oh, yeah. Thank you. We appreciate it.
>> Holy buckets. This was awesome.
>> Um uh all right. Well, uh we're going to jump right in because uh we had we had uh we had hoped to talk to her earlier, but we have lots to discuss with our next guest and that is uh Dr. Robin Pegg.
>> How are you?
>> I'm good. I'm good.
>> Before we start, it's a power hour.
>> Okay. Right. Oh my god. Sorry. I got >> I got so excited talking to Cameron. Um, so when there's a power hour, I do a power hour up to did you say how much?
>> $2,000.
>> We have000 >> who has said they will match donations this hour up to $2,000.
>> That's awesome.
>> Everybody who donates this hour, your donation is doubled. what that's done for us. In the last power hour, Joel decided he thought it would be fun to throw out there that if somebody donated $1,000, he would jump in the pool in his clothes with his clothes on. And so then we realized, well, during a power hour, that only means a $500 donation. So Joel's going in the pool at the end of >> I will be going to the end of the pool probably twice, maybe >> because two people donated $500 a power.
>> That's fantastic. I love it. We can do other stupid things. We've been talking pie in the face. We've been talking all kinds of things. So, he'll sing and dance.
>> Joel just Joel doesn't think things through.
And he makes himself available for way too. I should have asked for more money.
Not like for me.
>> We're up in the game.
>> Yeah. Not not for me, but like we I should have asked for more money in donations and stuff. Um but but hey, how you doing? How you doing, Robin?
>> I'm good. I'm good.
uh that well uh thank you so much for for joining us and um uh and I'm so glad that we were able to to work it out and you know with the with the schedule. Um and uh primarily and I'm going to turn this over to Sarah because I know that this has been uh the main thing that we're going to talk about has been a brain uh one one of the brain children that you and Sarah have worked on for a long time. And so, uh, no one wants to hear from me anymore because they're just like, "Shut up and jump in the pool." Uh, but, um, the knowledge network, uh, what is it? Why are we all so excited about it? And why should everybody else get excited about it, too?
>> Well, the gosh, and I want to say, uh, big shout out to John as well, because John was really a part of, um, getting this off the ground as well. So, it's >> he gets nothing. Thank you. He gets nothing. It's been a team effort.
>> So the here's what the knowledge network is. for many years um people like Michelle Self or at different times um different other individuals you know Bonnie Klein Tasman Marissa Fiser you know various people over the years different OT's PTS speech therapists music therapists that have come in and out and of the WSA here and there have always been willing to be um to pick up the phone to answer a question for a family to um share some advice and over the last oh I would say for probably 10 years or so um Michelle self and I have done this really regularly and um one of the things that we did you know several years ago is we told families we said you know we'll give you three hours of time across you know to do education stuff you know so this means you know was it a read an IEP or attend an IEP meeting virtually or sometimes in person depending upon where the IEP was. Um, you know, or you know, just kind of give some advice, attend a meeting, you know, whatever that was, read through an IEP and then give some feedback, whatever those things were. Um, Michelle and I have done a ton of that work over the last several years. Um, just around education.
Well, here's the brainstorm. One of the things we know about families is they don't just need help with IEPs. There's a lot of families out there with really diverse needs and there's a lot of people out there that are affiliated with the WSA in one way or another. So, this was a way to bring all those friends together and then be able to meet a need for families because guess what? Yeah, there's consultants out there that charge thousands of dollars to read an IEP or attend an IEP meeting. And you know, some families can afford that and some families can't afford that. or same families really don't need that much either. So they just need somebody to, you know, maybe it's write a letter to a principal to say, "Yes, my child needs to repeat kindergarten, okay? And here's why." And be able to ground that in some research. Um, so what we did is we got together with all those friends that are out there.
There's I think our team is up to about 15 different consultants that range from everything from good old education stuff with IEPs and things like that to behavioral consultants to grief consultants to somebody that will help you with the paperwork to do all of the adult paperwork, the social security paperwork and um adult services paperwork to somebody that will help you look at transition planning. how do I plan for my child and what they're going to do after high school or going into college? And so that whole list of friends, we brought them together and John and his infinite wisdom said, you know, it's like a knowledge network. And well, there it was, right? And so now we're able to offer families the same three hours, but they get to pick from a whole slate of different services now.
And we're super excited. We got some grant funding to help support it. And um gosh, it's one of those things where you've had an idea and it's been swimming around in your head and then to see it actually come to fruition is super exciting.
>> Not just a hat rack, my friend.
Thanks.
>> It really It really is exciting that we have gotten this off the ground. And I think the beautiful thing is, you know, you know that there are some families that like you've helped for a bit and then maybe Michelle's helped them for a bit and as you're working with them, you're thinking, you know what, maybe a little bit of uh help helping their private, you know, OT with some tips or we, you know, I can see that this family's really struggling because they have this uh really complex these complex medical issues and they're trying to navigate an upcoming surgery and they are feeling really overwhelmed.
So now as you observe those things, we've got this collaborative network of people that will you're going to meet quarterly and you're all going to collaborate on the things that are going on. And so you'll be able to say sit as a group and say, "Okay, we've been working with this family and as I'm talking to them, I'm hearing that they're struggling with this too. Does anybody have a suggestion? Do you uh is this an area of expertise where you could step in and support?" So, it's no longer just you working on something or Michelle working on something or Bianca working on something. It's this this really powerful team of people who have this deep knowledge of William syndrome that now can collaborate to support families in a bigger way. So, that's just it's really exciting that we've got that ability going on now, too. Well, and I think Sarah, you really touched on something that's really important too is every single person that is a part of the knowledge network is vetted. So those individuals have experience with William syndrome. So we have OT's, PT, speech therapists. We have an AAC consultant, you know, for augmentative and alternative communication for our kids with limited speech. We have somebody who has worked at WSA camp for several years and has a deep deep knowledge of augmentative communication.
So even some of those real specialty areas, we have people that can speak to those things and you know and the people that are a part of it are also willing to you know provide some educational resources. you'll be seeing those come out from them and as well as helping those families one-on-one.
>> Yeah, that's great that you brought that up. So, in this month's newsletter, if you all did not get this month's newsletter, that means you're probably not a member of the WSA or we don't have your current email address. So, if you didn't get the newsletter last Thursday on the 28th, make sure you go to william syndrome.org uh and click the join button and give us your current information or sign up.
It's free and we'll send you all kinds of things. But in this month's newsletter, we kind of kicked off that uh that enhanced communication around uh topics that are relevant to the knowledge network. And so you we shared a piece that you just put out that's incredibly relevant right now. You alluded to it. Um and we can talk about that in a second, but that is another great feature of the knowledge network is these consultants that are working in this network will also ensure that uh the resources that we have out there on the website are current. uh all the most most current information will be out there. They'll be putting out new tools and tips and tricks. So, you'll see now new information coming out in the newsletter as well with uh updated information and uh resources that'll be on the website. Um so, while we're on this topic, do you want to talk about uh briefly about the developmental double dip?
>> Yes, I'd love to. I'd love to.
So um what the developmental double dip is is a recommendation um just from years of experience that I see a lot of times we have kids with William syndrome that are a part of a typical kindergarten classroom or they might be you know they get they get preschool then a lot of times they're in regular kindergarten. Um, and you know, a lot of and what we see is at the end of regular kindergarten that they're going to be moved on to first grade or sometimes the schools will recommend that they start to get um a special education placement right after kindergarten. And what I've seen over the years, and this goes way back to a project that we did in Minnesota um in Henipin County Schools where we had several very young kiddos with William syndrome that we repeated kindergarten with those kids. And that project, gosh, that was shoot nearly 20 years ago that we did that project. And and I've seen it repeatedly. I the the same results over and over again. And so what that developmental double dip means is this.
Give a child with William syndrome two years of kindergarten. The first year of kindergarten is so that they can figure out how to be a student, how to stand in line, how to sit at circle, how to wait their turn, how to manage all the supplies, how how how to do all that stuff with less of a worry about academics.
You know, we're just figuring out all the social stuff. we're figuring out, you know, all those routines and how to get control of our body and how to attend to a task and all of those things.
And then the second year of kindergarten is about the academics. And what we see in and what I have seen over and over and over again in loads of kids with WS is that they're ready. The academics are ready. We just did a project um in Lake Havsu schools in Arizona and this was a really it's a great attest attestation to this process because we had a beautiful little girl, sweet as can be. Oh my gosh, I don't have a child with William syndrome, but I always imagine if I did, she would have looked just like this little girl.
Red hair and oh little glasses.
Adorable. Totally adorable. But um she was in kindergarten, she was finishing up um her first kindergarten year and you know the teacher had shared how she really struggled with the academics. You know she could follow the classroom routines. She could sit in circles. She could do all of those pieces. And so we had a long conversation. I said, "Well, how would you feel if we could have her repeat?"
And she goes, "Well, I just don't think that's the right thing. I think she's ready to go with like all of her friends are ready to go." And I said, 'You know, I just I just want you to trust me on this one. You know, you know, I can show you a bunch of research, but I really think it would be great if she could repeat kindergarten and if you could be her teacher again.
And the teacher was like, I don't know.
She wasn't sure at all, but she said, you know what? I'll I'll try. You know, we'll go for it. Let's just try.
The little girl came back to school in the fall and they all grow and they develop over the summer as usual. She came back to school in the fall and literally within the first month of school where she had not been printing her name hardly at all the whole first year of kindergarten within the first month of school she was printing her name. Now granted it was really short.
It was only three three letters but she was printing her name. She remembered all of her letters down. She was ready.
She was literally on target with every other kindergartener in the class that second year of kindergarten. And so that's what the developmental double dip is. The developmental part is that the kids need some time to develop and it's a double dip because what I don't know I guess I've just called it that forever.
>> Joel's going to be doing the double dip >> and I call it the developmental double dip. I think we can >> learn from it.
there'll be learning that happens.
That's awesome. So, that that was published in the newsletter. So, that's on our website. Uh and that's that's a that's one example of why we're doing what we're doing this weekend is that you've alluded to research, you've alluded to, you know, the knowledge network, these three hours of services that the families get are at no cost to them. And so, the way we do that is by raising these funds. And so we're doing this this weekend uh to raise funds for all of these types of programs. And like we mentioned earlier, uh it's power hour. Here's the what you know makes us sound like a like broadcastathon. It's a power hour for up to $2,000 of donations will be doubled. You can donate by texting WSA uh to 71777.
There's a QR code on the screen. You can scan. You can also go to wsaay.org and donate any of those ways.
Tell us for the people that don't know you because we know you but not everybody out there knows you. Just tell us how you started uh how you got introduced to William Syndrome. Uh how long you've been doing this gig with us and why you stick around >> besides us. It's not a funny >> No, why why are you sticking around?
>> Yeah, letting me be with a long time.
You can be with way cooler people.
>> Oh my gosh, that is funny. Well, it's it was literally about 30 I don't I think it might be 31 years. It depends on his birthday. But if you've ever met Curtis Cunningham. Um Curtis Cunningham, I think he's 37 years old now. And he was seven when I first met him. Um and so that's been about 30 years ago. And actually I met his mom first. I was doing a presentation uh at a conference on curriculum accommodations and how do I get this kid to do that stuff and um back in those days I worked a lot with kids with autism down syndrome and cerebopal paly those were you know and then a few other little rare just rare disorders I had a kid kiddos with um I had a kiddo with listenphilley I had a kiddo with Smith McInness you know a few rare conditions but I'm doing this presentation And throughout the entire presentation, Aaron Cunningham, Kurt's mom, had her hand up. She was asking question after question after question.
And um she comes up to me afterwards and she sticks out her hand and she says, "Hi, my name is Aaron Cunningham and I am your new best friend." And I'm like, "Okay." Um and she says, "I have a son with William syndrome." And I said, "I've never heard of this." And she said, 'Oh, don't worry. you're going to learn. She said, I know my son can learn things and I think you're the person that can help him. And I was like, okay.
Now, you have to remember this is 30 years ago, okay? So, there's no there's barely any cell phones. There's no iPads. There's no iPhones. You know, your laptop was like a brick. You know, everybody used I think we were on Windows 3.1 back then. You know, it was it was a whole different time. And um so Aaron would call me, you know, Kurt was in second grade and she would call me sometimes every day um and my on the house phone that was on the wall and my husband would pick up the phone and he'd be like, "Robin, it's that crazy lady again." And um and I would just we'd figure it out.
We'd figure out how is Curtis gonna do this math worksheet? How is Kurt gonna do that spelling test? how is Kirk gonna do this thing or that thing or the other thing? And that's how I got started. And then Erin was like, "Oh, I have a friend named Heidi and she has a daughter with William syndrome. I just thought you could meet her and then I have another friend named Laura and she has a daughter named Kate. Can you talk to Laura? And then I have another friend."
And it was just kind of like this. And then the convention came to uh the convention came no what was came first I can't can't remember we were sitting I think the convention came first and she said I think I think you should present you should present at the convention on the stuff that you do and I was working with um Dr. Jill England who does also does curriculum work and stuff like that and had done some things with Kurt's school. And so I started presenting at the conventions and then I went right from that to Aaron and I were sitting on a board together and she came up to me at the copy machine. Always dangerous FYI and she says, "Oh, I have something else you need to do." And I said, "What's that?" She goes, "I need you to be the wreck director at this summer camp for kids with William Syndrome." I said, "I've never done that before." She, "Oh, don't worry. You'll be fine." And um so the camp had been in existence for two two years, maybe maybe only one. No, there was family camp and then one year of camp and then I started that next year. And um and then I did camp for 15 plus years. So yeah. So that's that's how why do I stick around?
Because it's the coolest thing, >> right? It's the cool it. So, >> we are the cool kids.
>> We are the cool kids.
>> Oh my gosh. Well, and here's the thing.
Like, I love puzzles and the complexity of how these kids learn was it was a puzzle and I needed to figure it out.
And and then I got to go to convention and I got to talk to like Dr. MVIS and Body Clyde Tasmin, which Terry Mona made a lot of fun of me because I was like, "That's Dr. MVIS." And she's like, "You want to meet her?" And I'm like, "Oh, no. I can't do that." You know, like I was totally fangirling. And but you know, now those people are my friends and we work really hard to kind of decipher all the little pieces. And it's like my grandpa used to call it sharpening your pencil. you know, how do we get it so that we can really refine that learning profile? And gosh, it I don't know, never gets old. And it every time I have one little more kid that learns to read, writes their name, is doing math, graduates from high school, goes to college.
Yeah. Yeah. That makes every day good.
>> It really It really does. And so that's I think one of the important things to to hear for if there are parents out there watching. I know we had uh we had some people on earlier with whose kids were just diagnosed. Uh there just there's been an incredible amount of research done around these topics we've talked about uh and and there are clear clear studies and really uh great guidelines around how to teach our kids to read and how to teach them math. And so if anybody's ever telling you that that can't be done, uh you need to reach out because uh there there there's always an exception to the rule, but there's there's such great stuff now.
And so we just spent the week at camp.
So, you know, as camp has evolved and we just came down from camp and uh you know, part of some of the really cool stuff that happens at camp is uh you know, we we got to spend some time talking with the parents of the six to 12 year olds that were there. You know, so their kids were off. Uh they were singing in kids choir and we got to sit and have some uh some very real conversations this this week. And that there have been lots of conversations over the past few years that I've been at camp, but this this week there was something just really uh really different about the conversations that we had. Uh and the exciting thing was the day we were talking about education and just started into the struggles people were having. You got calls right away. Uh the the knowledge network like right off the bat was we were able to say, "Okay, you reach out to this person. Here's the person. go online, click their click their link to make a make a an appointment with them and go.
And we did that with multiple people uh this week. And it started with education, but then it continued into like I I came here because I wanted other people's in input on how do I tell my child that they have William syndrome? Um and then how do I tell their siblings that they have William syndrome? And we were able to say reach out to this person on the knowledge network. That's one of the things they do. And so, uh, it it was a pretty incredible week and that there were some really hard conversations and some very vulnerable conversations and truly, uh, I think everything we talked about, we were able to say, you know what, we've got uh, we've got somebody that can support you through that. And then, uh, somebody we brought into camp, we were like, I think maybe you should be part of the knowledge network. So, we may be expanding. And that's the beautiful part of this is even through like starting uh as as we've been planning convention this year, we've found a few great resources that I think might be a great addition to the knowledge network and as we you know hop into conversations with people and learn oh that it's a gap we have and uh we know a great place for you. So, it's been a really cool week and as as the knowledge network is getting launched out there, we're getting some really great reinforcement that this was so needed and such a great direction to go down and it's really exciting to be able to add uh add to this. So, um, if there are families out there that see a need that we don't have filled or that you know somebody that's just a like, um, incredible expert at something, uh, William syndrome, point them our way because >> we want to grow this this space of just >> 100%.
>> I want to share this comment that just came in. I'm gonna pull it put it up on the screen here just a second. uh from Christy Cook uh who is responsible for me dunking myself later.
Uh my kid is one of those. She can reach. You won the math achievement award. And you're so valuable to this community, Robin. I fan girl on you and now get to call you a friend.
>> Oh, that's awesome. That's so sweet.
And I'm sure we could publish a book uh of those of like comments like that for the impacts that you've made on the lives of of our kids. So, it's it's pretty incredible.
Well, I I I have to echo what you said.
I you know, if there are people out there that are doing really good work with kids with William syndrome, please let us know who those friends are. you know, it you know, it's it's fascinating to me sometimes how, you know, I'll have an interaction with a teacher or something. Um, and Michelle has Michelle self has said the same thing. You know, sometimes she works with a family and she works with a teacher and that teacher will call her or email sometimes years later and say, "I want you to know some of those things that you taught me to do with soand so I now do on the regular for all my kids." and I just got another student with Williams syndrome and I feel ready and prepared and I also know who to call and I think that's the whole thing you know as as the William Syndrome Association you know we're that sort of core resource that sort of knowledge base for people that place that they can go to say how can I get some help and now we can not only teach kids with specificity we also have the ability to support families and the community with some specificity and you know I that only can make things better.
>> Absolutely.
>> Anybody else?
>> Uh the you know the funders the knowledge network is really resonating with with funders um because it's so tangible.
It's direct to fam, you know, families.
Um, they're able to, it's geographically all over the country. And so, as we presented it to, you know, to different uh funding bodies, it it's it's uh it's kind of a slam dunk. Um, so hope hopefully we can keep getting the resources to nurture it, maybe add hours, expand the services, um, because it could grow. it it has the potential to to to grow and and and really be a comprehensive um resource.
>> Yeah. Yeah. And John, thank you for your work with that. It just to be able to launch this and see it come to fruition is is it's just unreal and such a valuable support to all the families.
So, you know, with this power hour, I'm super excited that the donations up to $2,000 are matched. So, if you're out there and this stuff is important to you, please donate. I'm just going to put the sale sales pitch in there.
>> The double dip over here is crawling around on the floor.
>> Audio.
>> Oh my gosh.
>> And we've been telling everybody the best thing they can do right now uh is to take this live feed and share it to their page. So then other people who don't know about what we do can learn about it, too. and maybe they'll uh see what a great cause this is and want to want to contribute.
>> Robin, I have a question. Uh so you've been doing this for a while.
What has surprised you? Um or is there anything or things that about working with children with William syndrome that early in your career you had one opinion and and and now you're or at some point you were surprised to go, wait a minute, that's not that's that I was wrong. Oh, this is my shame.
>> You got to reframe it.
>> This is my shame. Oh, >> all right. Well, don't answer this.
>> No, no, no, no. This is an important question and I'm really happy to answer it. So, early on when I first started working with William syndrome all those years ago, a lot of the sort of research of the day would say that people with William syndrome um had limited capacity to live on their own. um they also academically um might not move past, you know, second to third grade, especially not in math.
And you could really just expect that they couldn't learn math. Um you know, that that was going to be really hard and just, you know, understand that, you know, they're not going to get past second to third grade and there you go.
And reading might be a little bit more, but that's okay. And um and it was interesting because there was a single solitary voice out there. At least I feel like it was a single solitary voice out there, you know, saying that's not true about reading. It's not true. You need to listen to me. And you know, Dr. Carolyn Mvvis would say over and over, teach them with phonics. Teach them with phonics. Teach them with phonics. And then what we realized is here's the other thing that happens with math is there's perceptual components to math that um as we dug deeper and Dr. MVA started a vein of research on math as well. What we figured out is that there's the perceptual components of math are the parts that the kids got tripped up on.
And so when we looked at the marriage of how math is taught to how kids with William syndrome process math information, we figured out that there was a disconnect. The barrier wasn't in the kids' ability to learn math. The barrier was because of how it was taught. And and that was like, you know, such an epiphany because we figured out if we teach the math a little bit of a different way, it was a situation where we we can't go through the tree, we have to go around the tree.
>> And um because here in the United States, we teach math um in a way it's called CRA, the CRA approach. Concrete, representational, and abstract. Okay? So concrete math is what happens in kindergarten when you count little things, right? And then you get to about second to third grade. So this is why the research used to say what it said, which is representational math, which is where you get the question that says, you know, John has 10 apples and Sarah has five apples and John's going to give five apples to Megan. So how many apples does John have left? And then they want the kids to either picture that in their head or draw pictures to represent those apples.
Both of those things require heavy perceptual components. So those are the struggles for a child with William syndrome. So what we figured out is if we keep that stuff concrete, skip all that drawing and imagining stuff until we train them how to do it because there's a way to do it. And then we move over into abstract be because and teach them the process for completing a problem like teach them the math words that give them hints on how to set up the problem. Give them the process of how to set up the problem and ask them to do the math. Well, voila, they could do that. They could do that just fine. I have more and more kids.
>> Pardon? How many years ago was that I mean that sort of that that reframing when >> probably been 10 plus 10 almost 10 15 years ago now. Okay, >> cool.
>> That we've started really, you know, saying nope, they can, they absolutely can learn math. And and we see it with reading too when we thank God when the Soul Story podcast came out just right about COVID time or so when that came out and the whole world flipped from balanced literacy model to a phonics model under science of reading. um that cleaned up the reading.
And so now we have more and more kids reading and the the the few that were taught with a balanced literacy model, as long as we can get the school to simply do a phonics model, we start to see gains.
And um you know, so we're we're really kind of cleaning up a lot of these misconceptions.
And really the secret like I always talk about with kids with William syndrome, it's not so much about ability as it is about access.
Can they access the curriculum? Is the curriculum being taught in a way that they can access it?
>> So for example, the math the the the math way of teaching it that you're describing the new newer way 10 year 10 years ago or so. How widespread would you say that is? How how widely known do you think that would be in the educational community? Uh the disability or the special ed?
>> It's not. It's not. No, I'm I'm preaching it as loud and as far as I can possibly preach it and so does Michelle.
Um but it's not. You know I there is a program by Linda Moodbell called um on cloud9 which teaches visualization of math problems very explicitly. It's a wonderful curriculum um that you know kids can get if they go to a Linda Mood Bell center but um it's very very very expensive um and you know there are other math programs out there that also teach that way. One of them's called Matthew C. There's another one called Stern Math and they teach math in a way Stern Math is based in Monasuri. They teach math in a way that's very accessible for kids with William syndrome as well, but it's not out there.
>> Do is that unique to William syndrome or is that a method that the children with other types of disabilities would benefit? Do >> Yeah, the kids that have dcalculia, the kids that have Yeah. Discalcula. In fact, for for a lot of kids with William syndrome, the slate of accommodations and things that we would do for a child that had disgraphia, which means they struggle with writing, dyslexia, which means that they um struggle with print, okay?
And discalcula, which means that they struggle with some aspects of math. The slate of accommodations that you would do for a child that has the disses, so to speak, is a very similar slate of accommodations that you would do for a child with William syndrome because the perceptual struggles that the kids have are relatively similar.
>> Interesting. Robin, if there are parents out there that have kids in middle school, teenagers, adults that can't read, can can they read? Can we Is that a possibility?
>> Yep. Absolutely, 100%.
>> Okay. So, I will quote David Copenhaver.
David Copenhaver did a project um he was the co-founder of the center for lit literacy and disability studies at UNCC Chapel Hill. He did a research project with William syndrome and he said, "Robin, I've never met a kid with William syndrome that couldn't learn to read."
>> Okay. Maybe maybe at some point when we're ready for it, we do an article on that or something remind people of that when you're ready for your inbox to blow up. um because then we're going to need to teach people how to reach out to you or what the right thing is to do next through the knowledge network. But I I that there are teens like from camp this week that were saying that they can't read. So like their kids can't read and so it's I think that's such an important message to get out there. So we'll uh make a plan for how to beat that drum and get that out there as well.
>> Well, if any families want to get a hold of me, they can always email me. My email is r pegw williams- syndrome.org. They can always email me. If you need consultation services, please go through the knowledge network page. You can click on there and click into my calendar. So, >> absolutely happy to support.
>> We so appreciate you being here and we so appreciate everything you've done for our community. It's such important work.
You've these things have changed the lives of our kids. So, we're incredibly grateful. Well, I'm I'm blessed every day. Every single day. So, thank you.
>> Thank you.
>> Thanks for hanging out with us.
>> She's a legend.
>> Have a great evening, guys.
>> Take care. Thank you, Robin.
>> Be sure to tune in for the double dip over here.
>> I'm gonna I'm ducking out for this next segment.
>> Okay.
>> So, going to take my laptop and charge it.
>> What is our next seg? Well, we um we have the the the Cohens coming on. Uh Beth and Ben Cohen to talk. Um Oh, I should almost have my golf Sarah, before you go downstairs, can you toss me my golfer Williams hat >> cuz then since they're going to come on and they're >> And we're wrapping up a power hour, too, right?
>> And we are wrapping up a power hour. You have a couple minutes left uh to donate.
And uh every donation up to $2,000 is uh being matched right now. Um yeah, so uh thank you all so much for for tuning in.
Thank you all for so much for donating.
Keep those donations coming in. Keep sharing uh keep sharing the the the that this is happening. We're on till 10:00 tonight. And um yeah, and we'll be back again tomorrow. Excuse me. We'll be back again tomorrow at noon to uh to continue the shenanigans. Uh and um and not just shenanigans, but also talking about some very important stuff. Um well, they're they're in uh they're in the holding the the the uh >> bullpen.
>> Yeah, the bullpen. I was thinking of it.
The um uh what's the thing in uh Superman? Uh the forbidden zone. that triangle thing that that God and his people are put into.
>> Uh but uh that that's where I like to think everyone goes to. But uh let's let's welcome them in. Uh Beth and Ben Cohen, welcome. Welcome. Welcome to uh to you and welcome.
>> Thanks for having us. Woohoo.
>> Thanks so much for having us. Super excited to be here and be a part of the cause and happy to support. So glad to have glad that you guys are able to have us on.
>> Yeah. Fantastic. Um well, I am uh I am wearing my Golf for Williams hat. Uh which I I don't know if people can see.
I don't know what the resolution is, but um it sure it looks good and it saves people from having to look at the top of my head. Um but uh so you know that's one of the things that uh that the two of you have been um that you that you know you guys have brought the I mean you know one of the things I noticed about a golf tournament is you know people just some people just want to golf and they don't really it doesn't really matter what it's for.
They're just like oh here's an opportunity I'm going to get you know three buddies. We're going to go out and golf all day for a good cause. But then they learn about the cause and in this case they learn about William syndrome and it feels like oh then and and especially if it's a golf tournament where they get to meet uh meet some people uh with William syndrome suddenly the golf tournament becomes a little bit more than just a day out for golf. Uh can the two of you talk a little bit about your experience um hosting hosting golf tournament uh ho you know and and interacting uh with people who might not otherwise know about William syndrome.
>> Sure. Go first.
>> Yeah. Yeah. We first did uh our golf tournament back in uh 2023. Um it's certainly something for us. Uh we thought it was a great way to connect multiple communities both personally and professionally. Uh and it was a a great undertaking but something that we um were passionate about and uh had so much support just from the William Syndrome Association from reaching out um to getting down to the the day of and helping execute and having resources and support there. So, um, with that, we've certainly been doing a bunch of fundraising opportunities, not only through golf, but, uh, through the walks, uh, we're actually putting on, uh, through Beth's, uh, work and network connections, a concert. Um, so there's a lot that we like to do from, uh, support and community perspective, but golf is certainly something that does bring people together. Uh, I I tell Beth that every weekend when I go golf. Uh but it's certainly have that as as something as well to do for uh the William community and having people involved like the Hawks um who are in New Jersey and other families like the Mllos um who've been a part of this and and have been at our events before. So uh certainly something that we see uh is just a great opportunity to bring people together and certainly raise more awareness and funds for the William Syndrome Association just because we believe so strongly in it um and for what it does for the community.
Yeah. Yeah. Um I'm sorry. Go ahead, Beth.
>> No, I I I mean obviously I echo everything that that Ben says and I think that when we when we first um decided to do our first golf outing, we were you know uncertain about what the reception would be. I think we actually um kind of undersshot like what what we should be um you know enlisting support for like what type of sponsorships or um like how many people we thought would come. Um, and I think, you know, at first the reservation was, you know, William syndrome is so rare and and will people feel impacted or or moved to support if they've never known someone with William syndrome? And I think that's really what we were so overwhelmed by was just how many people are touched by some rare disease. If it's not William syndrome, you know, maybe it's it's it's another diagnosis and and how, you know, to know our kids with William syndrome is to love them.
And I think it's it's just impactful how how many lives Kylie has touched in her four years of life so far. And just, you know, I guess just surprising that um how many people showed up. So if that's anyone's reservation from kicking off your own DIY fundraiser, um you know, I think that that was a lesson learned from us was just like people want to help and and um support however they can.
>> Yeah. Yeah. Um, so I know that you have been uh working with Paula >> uh on on this. Maybe maybe the three of you Paula maybe um I'm kind of putting you on the spot here but maybe you can talk a little bit but maybe you can talk about a little bit of like what you know what is that initial conversation or like >> I mean because we talk about it in the abstract of like oh no it's it's easy and we have a whole s but like what what is that like that conversation uh like when you you know when you're getting when you're like I think I want to do an event or I I I've participated in a golf tournament before uh or you know a a golf uh event. Um I I want to I want to hold one.
>> I I want you guys to elaborate a little bit more how you bring this opportunity that comes from work. So you know the the concert that you guys are >> um now in June. Can you talk a little bit more about how you bridge this you know personal u mission that you guys have with work related events?
>> Sure.
Yeah.
>> Um, yeah. So, I think that, you know, we we've kind of had a few different types of events and and you know, you the first question was like how what the conversation's like when we've engaged the WSA before. And so, um, one example last fall was I I decided to raise money for the WSA um through the through running the Philly Marathon. Um, and I I reached out to John um with almost no notice and and was like, I'm running the marathon in a week, like, can you help me set up a site? And um and and let's let's let's do this. And we ended up raising, I think, $12,000 for for that effort. And this just so responsive and so easy to work with your team of just like, "Yeah, let's do it. What do you need? Do do you need us to use our site?
Is there another site you want to use?
How can we advertise this? We'll put it on our Instagram story. So, um I mentioned that one first because it was a very low lift, ad hoc kind of last minute effort that we uh that we were very successful, I think, with raising money. Um and the the concert that Paula just mentioned um is actually more of an established event that a colleague of mine at AON has been doing for for years and years at the cutting room in New York City. Um, and he recently started just picking charities that were meaningful to people in the commercial insurance industry. So, through my advocacy, you know, I'm I'm constantly posting on LinkedIn and um, you know, inviting my professional networks to events. He actually heard that my daughter had William syndrome and and we actually don't even work together um, and approached me and said, "I have this concert coming up in June. Would it be okay if we elected the William Syndrome Association as the beneficiary?" Um, and of course that's amazing. You know, I'm so excited that we're going to be able to kind of not only, you know, um, hopefully fund raise, but but just spread awareness and and have some fun and actually bring, you know, some some families with William Syndrome to that event to help kick off the band. Um, so again, a kind of a different avenue, but again, Pa responded probably within an hour being like, "Of course, this is this is how we can help. We'll set up a site. Do you want us to do a flyer? do you want us to advertise? Um, and it seems like you you you really take our lead with with however you can help. But >> I think that's always been I think too with the William Syndrome Association is is certainly something where uh any email, any outreach has been uh you know, welcomed and certainly very responsive and and when we first were going through our journey of Kylie's diagnosis, it was great to have an immediate network to go to. And I think that's what's helped us be so passionate about supporting the William Syndrome Association both professionally um and personally. And it's helped us really, you know, grow awareness when we're going to work events, when we're talking on our professional settings, making people aware. Uh I certainly I I wear a pin that I'm I'm wearing right now that I wear to all my work events. Um you know, that uh is something for me that's been a conversation starter and I love to to wear it so I can talk to people about it. uh because it's certainly a passion of mine and and you know anything that I can do to raise awareness both Beth and I anything that we can do to raise awareness for the William Syndrome Association is is always going to be a goal of ours and to have this event where uh my work is going to be supporting with the happy hour. We're going to be having a rooftop event before it. It's it's aligned with the World Cup which is great. Um so you know these are the types of events where you're able to really figure out you know how can you bring bring people closer. Um, and then with a golf outing in October, again, getting support from our professional and personal network.
Um, it's been great to speak with uh, Paula and and figure out, you know, what resources are set up and established.
There's a lot of templates already that you guys have created. Um, so we don't have to reinvent the wheel. you know, we can plug into the systems that are created um to really, you know, activate um a low lift sponsorship opportunity, which does take, you know, time and resources from us, which is great because then it helps us focus on more outreach, more awareness, and more driving um you know, sponsorship, revenue, and awareness, which is what we want to do for the WSA.
>> Yeah, that that's awesome. Um, I'm sorry, John. Do you have any Well, I wanted Well, you just No, no, no, I do.
I do. I do. Actually, >> you were staring at me or you looked at me like >> I was just staring at you, but that's a separate >> Kylie. Tell me about her personality.
Um, four years old, right?
>> Yeah. Tell tell us about her.
>> She is um I mean there's there's there's almost no words for how much joy she brings us, but she's she's hilarious.
She's super friendly. Um, you know, always wants to engage with with others, like kids her age, adults, doesn't doesn't matter. You know, she just um she just brings joy to everyone she meets. Um, and uh it it's just funny because every every we took her to the zoo today. We took her to a restaurant and we took her if we take her on a I took her to see the ice cream man today and it's just always I had so much fun, Mommy. I had so much fun doing that.
like she just makes the the mundane, you know, just just joyful, you know. So, I think um I think it's it's no surprise that when when people meet her and they um not only are touched by her personality, but then hear, you know, some of the the the risks that come with William Syndrome and their challenges and and they just are people just wanna want to help. They just if Kylie if Kylie is impacted by this and it's like you know people just want to protect her. So but yeah she's she's the best. Yeah, she's made our just our lives so enjoyable and uh I think her personality has helped us throughout our journey. Uh especially too with the resources through PT, OT, speech, everybody that's been a part of our network to help support um just loves Kylie. And I think because she loves them back so much and is so warm and welcoming that it it just makes everything so much easier and and I think people have pushed her um you know to want to thrive. And I think that's been really great for us to just have such an overwhelming network of people that support us you know whether it's going to CHOP or now um the Armalino Center of Excellence uh or even just our our local resources that we have. Uh, everybody's just so supportive and and and contacts us. And I think just because of Kylie's personality when she comes in. Uh, everybody just gets has a big smile on when she walks in the door.
Um, she'll have a joke, she'll have something to say that's just so cute.
And I think, um, you know, it does help us as we continue to go through this and just get so much support. Uh, she's in school now, which is really great. And certainly something um through our our district and county were able to get um IEP services and and you know we were nervous at first by having her be in a school setting. Um but you know we see her at school and the teacher's grabbing her hand. She's at the front of the line. She's like don't tell anybody. So I guess this is going out to everybody.
But don't let you know that's her favorite student.
But certainly something for us where um it just life's just so much enjoyable with Kylie.
>> Well, you both light up when you talk about her. So, >> and now remind me, are you are you able to come to convention uh this year?
>> Oh, man. You're making us say it. Um, >> oh, I have >> unfortunately through >> my work.
>> Everyone should go though. Everybody should go is able to attend. You will definitely be at the next one.
>> Yeah, I I have uh through my work I work on the weekends through live boxing events. We actually have a fight tonight >> during the week.
>> But I travel during the week and stuff so it just is unfortunate where it comes at a time where I can't. But yeah, >> we we definitely want to go to a convention and certainly something everybody that we speak to just says, you know, how important it is and not even the >> just the experience being there, but the content, the programming that you guys do, you know, and scheduling across it, I think for all ages, from what we've heard, it's been really great, you know, speaking with the MLS and other families um who've been able to attend. So, I think certainly something for us. It's not a matter of if, it's a matter of when. Um it's certainly something for us that we're going to do. I'll miss you.
But uh well then hopefully in in a couple years then you can come to my hometown and and come to the convention in the Twin Cities. Um I love that.
>> Okay. Be there.
>> Yeah. Uh I I'm so you know we were talking about Kylie. Uh and I uh I I a little surprised that we didn't ask you. I mean obviously she's wonderful and and lights up a room and everything, but in terms of golf, what's her handicap?
>> We wait. We just bought her her first like real golf club that she's actually get starting to enjoy.
>> Oh, nice.
>> Yeah. And now she has a a one-year-old brother who now wants everything that she has. So, he's been trying to steal that from her. So, we're working on her golf game. Um hopefully to have her hit maybe a shot or two at the outing come October. So, >> there you go.
>> There you go. Uh yeah, golf is a on my wife's family, golf is a big uh a big component of their of their family culture. And so my mother-in-law, my mother-in-law, father-in-law before he passed away, but they like they were they got the uh all the all the grandkids, pardon me, got uh golf clubs, you know, upon like turning three.
>> Oh, wow. All right.
>> It's a late start.
>> Yeah. and and then getting out there and they you know go out and hit golf balls and Bennett uh you know so and it's you know it's eye hand coordination it's all good things he has no interest in like playing around but he loves going to the driving range or going to Top Golf where you can sort of play the games within hitting you know uh hitting off the you know hitting just out into the uh the the yard I guess I don't know um but yeah the um That's been great. Uh >> I have a feeling she's gonna like being in a golf cart. That'll be one thing we haven't done yet, but that's be a big one.
>> That's the highlight.
>> Yeah. Yeah. Um going back to uh real quick what you said about uh about school and the I I kind of just because we just finished talking with Dr. for Robin Peg. Uh, and you're talking about and and the experience you had where it's like, you know, we, you know, we don't want to tell people, but you know, Kylie's her, you know, you're my favorite student, that whole thing. Um there there are stories uh there are stories that we hear a lot of um teachers when they meet when they have a student with William syndrome um that is often that's I mean it's not uncommon I I don't want to use favorite but it's it's usually a really meaningful teaching experience >> um And you know, so I I I I sort of I'm saying that in conjunction with what Dr. Peg was saying about if you just I I if you're if you're just curious, if you're as a teacher, if you're if you're just willing to uh you know, obviously you can it's easy to to to fall in love with our kids because of uh their you know their personality and stuff when they're when they're little. if you, you know, don't just see them for the cuteness that they are and the fun personality, but get curious and take that little extra leap to to to challenge the kid and and use some tools and accommodations.
um as a teacher, you're going to have one of those uh uh momentous teaching uh you you know the things that you're going to that oh this is a student I remember uh sort of thing and it's a student that made a difference in my life. So that's just my little PSA for teachers out there if anyone's joining us. Um thanks Ted love your love uh love your student with William syndrome. There's minds at work there. Yeah, I mean I think I think as you as you say that too a big part of you know why we want to continue to raise money and have advocacy is for the education resources are important. It's certainly something again for what the WSA promotes and I think as we're doing these you know events again uh June 18th and October 5th uh that we'll be doing this you know for us these are the types of um resources that we want to continue to support and make sure that um you know is getting the proper support just because it's so valuable and it's been so valuable for us and when looking at education and trying to figure out Kylie's path you know the WSA was a resource for us and so uh thinking about how this fundraiser that we're gonna be doing and more fundraising that we have and how easy it is to get involved. You know, these are the types of conversations um you know that that can be a resource on the WSA and that you do promote and that you do have as a part of um the conferences. So again, like I I just think the the fundraising part of this has been so important to us just because it opens uh conversations like this.
Yeah, you guys are so busy, I know, personally and professionally and and so your your dedication to um to our cause uh is it's it's really a beautiful thing because I know you've got a million and you're both marathoners. Am I correct?
>> No.
>> You're playing golf marathon. He's a marathon in the sense that sometimes he plays 36 holes.
>> Yeah, exactly. Yeah, exactly. It takes about the same amount of time. Her hers is actually quicker.
>> All right.
>> Yeah.
>> Um what uh going back to the concert real quick. Uh I I haven't had a chance to chat with Paula much because I've been at camp and stuff like that, but like what what is the So tell say more about like what the concert is? Like what kind of music is it? What what's going on with that?
>> Sure. It's called the the Mike Machia Band. Um and he's a cover band. Covers rock, kind of the classics. Um, and apparently it's always a packed house.
And so what we're what we're going to do in addition to, you know, fundraising at the event is we're we're planning to create merch that's like a co-branded WSA uh Mike Matcha bandana potentially is actually what's what's on our H. So we're going to pass those out.
Everyone's going to wear them, rock out.
We'll we'll charge for those. And um it should be fun. But uh but actually Gianna um and uh Anthony are are um both going to to help introduce the the band.
So um so yeah, we'll have some some William Syndrome representation there and should be good.
>> Yeah. And and certainly something with um you know the Philip Pazos and what they've done. Um, a lot of the times when we've done these events, like working with Camille, she's shown up to our events and I think that kind of talks about again just the community that has embraced us as we've joined into it and and you know, we're going to be going to her event um in November and I think you know, these are the types of things where we're going to get a table, have people come support um and and you know, bring people that are new to the community and I think these are the the types of opportunities you mentioned with golf, you know, bringing people in from different industries, backgrounds, etc. um that get to learn more uh and help be advocates and there's just been so much you know after we have these events or after we do fundraising or posting uh the fact of how much afterwards I get comments and and messages and texts about didn't know about William syndrome you know I've learned so much about this uh and certainly you know want to continue to get involved and do more so um just just love these types of events excited for the concert to rock out it's great um glad that you know Anthony will be there. And same thing with Gigi.
>> Yeah, Gigi could sit in on drums on a couple.
>> She Keith Moon kind of >> GI was uh hitting the skins a lot at at camp uh camp last week. Yeah, she uh she helps accompany a lot of the talent show stuff and and some of the band stuff for the the teens. Yeah. So, she's >> she she was Yeah, she was awesome. She's awesome at a camp. I threw this comment up there because clearly they uh I I'm hoping that they know you.
>> Oh yeah, >> Caroline Cahane. Uh they just I just I think that that Caroline is saying what we're all thinking and that you guys are are just super awesome. Um >> love you Caroline.
>> Uh Paula, anything else from you?
>> I'm just extremely excited. It's a privilege to be working with you guys.
Um, and yeah, I can't wait to keep on working with you guys and see what everything that you guys are going to accomplish because it's it's truly amazing and I it's I'm I feel very fortunate that you guys are, you know, I just started working in January, so meeting you guys >> right out of the bat. It's been it's been a pleasure really. So, I'm very excited >> excited for this new team and and you guys are doing great. I I'm surprised you're not going to stay up all night though. This is your this is it after this?
>> Well, we decided to split it into two days. We we did the overnight thing and um and immediately regretted it.
>> Oh, you had done the Wow.
>> We had Yeah. Like years ago when we like like when we first did it, we did it over like completely on Zoom. Sarah's on Zoom. I'm on Zoom and in our homes and we're like what are we doing?
>> Oh my gosh.
2:30 in the morning. No one's here.
>> Literally no. barely. We were here, so let's let's just pick it up again.
>> Let's just pretend it was. Yeah.
>> Yeah. And uh so we're like the days of the Jerry Lewis teleathon all night or or the the Pawnie Diabetes Marathon teleathon. Those are over. Um but uh nonetheless 24 hours.
>> It's a long day. And somehow I got myself roped into I get to jump. Well, somehow I volunteered, but uh I'm jumping into a pool in a little bit uh because people have given enough money.
So, there >> Yeah, I did that. Um >> call to action for sure.
>> Indeed. Indeed. Uh I will always uh look like a fool. Uh if you want to raise money, uh if someone wants to give like a thousand dollars or whatever, I'll come out to the golf tournament and hit a golf ball and it'll make and I promise it'll be bad enough that people will laugh.
>> I'll jump in the lane. I'll jump and then I'll jump in the lake.
>> Yeah, there we go.
>> Love the creative sponsor opportunities.
We love it.
>> There you go. Um well, thank you both so much for coming on.
>> Uh Ben, we uh I uh I know you guys aren't able to come to the convention, but we um we will get you a fresh fancy new a pin for all of your work events.
>> I love that. Yes.
>> Um and we'll get that to you.
>> And a plushie for >> And we'll and a plushie for Kylie.
a buffalo buddy, the buffalo plushy. Um, but uh, best of luck. Uh, we have a couple couple like a minute here left.
Shout out. Anybody you want to shout out or thank or anything? Um, the two of you. I'll I'll I'll let you have uh the last word here.
Um, I feel like we've called them out a bunch in this already, but uh, I think the between Camille, the MLS, the Hawks, they they really, you know, have been so welcoming to us and and when I was when Kylie was two months old, uh, I went to lunch with Gigi and Gloria and they I just felt so hopeful after that. And so I we want to be that to new families who just received a diagnosis. So remember our faces. if you ever need anyone to talk to, please reach out because I mean that's just that got us through those early days.
>> Can I ask you just real quick a little bit more about that? So like right after you got the diagnosis, so you're you're you're just getting this news. Um, >> I always when I'm talking to new families liken it to you have kind of have to go through the grief process because you're grieving the life that you know you thought your child might have or the child the life that you thought you might have with your child and it's a complete you know that's been completely thrown upside down. Um, and then you go out and you meet with the MLS and you're meeting with Gigi who's uh an adult at that point.
Um >> I mean I know that you said like the end result was uh you know um you know felt a lot a lot of hope and everything coming from that but how was that like just even that initial phone call of like you know you're you're going you you the two of you as a family are going through all of this and obviously you love your uh you know you love your your new daughter but there's all this unknown and then suddenly you get to go and meet somebody you know, a family and a person with William syndrome. Can you just talk a little bit uh about that?
>> Sure. Yeah. No, I think so. I I when we received Kylie's diagnosis, like I said, when she was two months old, I posted in the William Syndrome support group immediately and I I don't I don't even think I asked a question. I think I was just like, I'm new and I don't know what to do. Um and I think we got, you know, a hundred comments of of people just like, don't worry, like everything is going to be great. like, "Here's my 5-year-old. Here's my six-year-old, here's my 20-year-old." And I I just remember crying reading all the comments because like everyone just calmed me with like, "You have no idea what a wonderful ride like you have ahead of you." But Gloria reached out directly and asked to get lunch. Um I think she teases that she like stalked me a little because she was like, "Well, tomorrow is it the next day?" Um but uh but but yeah, I went while I was still on maternity leave and um Gigi was just like she's she's her personality is amazing. She's hilarious. She had just graduated college or she was a few years out of college and and that blew my mind. I was like what like oh my gosh like this this could be Kylie's future.
Like she's she's going to go to college.
She's going to play the drums. She's going to do all these things. And so I think it um that was a really really really um like I just I keep saying calming, but like knowing that like everything is is going to be okay. Like Gigi's past was different. She had her struggles. We we ended up going to a Christmas party that year that was like a William Syndrome uh Northeast region holiday party.
>> Um and met a ton of families of all different ages and that was really interesting too because it was it was yes there were some people that attended college. there was some kids that, you know, lived at home or had jobs in the community or whatever. And and I think it was just um yeah, kind of just knowing that whatever question came up like there's this huge network of between Facebook and and people that we've met firsthand that could answer for us. So, um so that that makes it a lot less lonely if anyone um is out there.
>> Yeah. And I think a big part of just the people thankful for like our our families have been nothing but supportive and and I think um you know it's been great to see how they've embraced Kylie and and have embraced the community of the William Syndrome Association, how um both our parents donate uh are involved. Uh Beth's dad actually um employs Gigi. Um and so that's something that's really great as well just because of the connection that they made. um you know he has her as a part of um you know uh what he does at his company and I think that's not just about the William Syndrome community it's about doing more and I think you know with our families and the immediate network that like they have we're just so thankful to have them um and it's been such a great you know um just people to to lean on um when times we just haven't thought that we had the right answers there just so many people that have been supportive and have been here for us. So, um, you know, those moments like with Gigi, uh, and Gloria, it just is fun now that Beth's parents are talking to them on a weekly basis, and I think it just is again just talks about the strength of the community and how welcoming everybody is.
>> Yeah. Awesome. What about um, Laura and Paula? it like would you be willing to just share like what was it like when you met your first family outside of your own like with when you after like after your kid got their diagnosis did you did you like reach out right away or did you find uh people >> yeah I reached out well my daughter's 27 so it was a different world back then um first thing I did was research and found that there was a William syndrome clinic at the in Austin and signed up.
Um and then we found there was a picnic close by and that was my first experience with a whole bunch of families um all at one time and yeah, no exactly had the same response. It was reassuring that there could be all kinds of options um what again it wasn't the same atmosphere as it is now. Um there weren't a lot of individuals doing bigger things. Um, but it still gave me hope seeing the range of of individuals that um were there and that um it wasn't as doom and gloom as back then you would read um because people were doing things. So it was exciting to see and it was a little overwhelming but exciting.
>> Yeah. And he got diagnosed um when he was well officially we heard it at 6 months but then you know a geneticist and then you know appointments and everything. We got the official diagnosis when he was 8 months. So after that I feel like I joined literally every single support group on Facebook.
Um Miami I I've I found it a little bit hard because they're not there's not much you know community down there. Um we're definitely creating that you know for the past years. Um and then you know we wanted to go to our first convention in 2020 but obviously life had other plans. Um and then it was until 2022 that we started you know being more involved with the association and that definitely was the game changer for us.
So >> and you did your own walk too. Yeah, we had a >> talk about I got friends from you guys sent us friends. So, >> I met a couple of your friends last year at the at the walk and yeah, I just it's it's been >> it's it's just a family. That's that's how I can describe it. It's my extended family and I'm so grateful to to have that understanding, you know. So, >> yeah, >> that support is everything.
Well, yeah, that Well, that's awesome.
Um, thanks for hanging out a little extra. I was just say that's for me. You got a little bit more, but we love it.
>> Yeah. Yeah. Um, all right.
>> Well, thank you both so much for everything that you're doing. Give the dates again. June >> June 18th for the concert room, New York City.
>> Yeah. And then October 5th at Matuchin Country Club.
>> Awesome. Awesome. Thank you both so much for joining us. Thank you so much just for stepping up, being involved, uh, and just an absolute uh, pleasure and um, and we we I can't wait to hear um, and see all the I I want I can't wait to see Kylie hit a golf ball.
>> We're ready for it.
>> But thank you guys. We appreciate it.
>> Have a good night. Thank you. Bye.
>> Bye.
>> Uh, all right. Well, that they they were a ding-dang delight.
>> They were.
>> Oh, yeah. They're awesome. Yeah. Um uh where and they're in they're right in New Jersey. Okay. Yeah. Uh yeah, I've been I was fortunate enough to go to a golf tournament in Rhode Island a few years ago. Um, and that the the experience I was kind of describing it a little bit uh trying to hopefully frankly assuming that they had the same experience, but um it was um it was really interesting that, you know, it was a bunch of guys that were just like showing up and like I I don't know why I'm here. I was just my boss came in and said, "Hey, you want to golf tomorrow?"
And I'm like, >> "Sure, take a day off of work and go golfing. Sure, I'll go do that." And um so it was a bunch of people who didn't even know why they were there. They just you know had free free day of golf and because we had I mean all the way from littles all the way up to a couple adults a couple of adults with William syndrome were there and were present and talking with people >> and in some case excuse me in some cases riding around on golf carts and hanging out with people. Uh it was like there were people that and and I luckily you know they they let me get up and talk a little bit about uh about stuff and I um a couple people came up to me and they're like look I'm retired and so this is what I do is I just have I just my friends invite me to golf for charity functions etc. and I go to so I've golfed a bunch and this is the first time I have met somebody with the condition that and then and having just this is different. They're like this this is the first time I'm like leaving really impacted and I've learned a bunch and I'm gonna you know she had a flyer in her hand. She's like, "I'm going home and learning about this and and telling people that I played in this golf tournament. You aren't going to believe these people that I met." And and I'm like, "Well, thank you. That's so, you know, that that's that's awesome that our people our community made that such such an impact uh there." And and so yeah, that's why like I say like events like that where you can that are somehow a draw for people who wouldn't normally hear about this. You know, so many of our events are >> opportunities for us as a community to get together because it's so hard sometimes for us to, you know, to even meet other families within our community. Um and and that's wonderful and there's value, huge value in that.
But you know when we're talking since this is awareness month and you know we're trying to raise awareness as well as some funds situations like this where you're doing an event and there are people that um are are going to walk by or be there that will have never heard of it before.
>> Yeah. Um, this year with this year with Bennett's chili pepper challenge. My son does a chili pepper challenge where he eats super hot chilies. I I don't get it, but he does it and he loves it. And um but we uh we chose a more public area and and actually there was a prom going on that night. So the area that we were in, there was people like because there's like a little lake and a little photo op place, there were people coming to take their prom photos there and because I was able to do had a little standup of William, you know, William Syndrome Association and and you know, little couple little facts about it. We, you know, we had people kind of come by like, "Oh, what you what you guys doing?" uh you know and like just just kind of looking and um you know and you were nice enough to send some uh some wristbands and uh and and stuff up. So I'm like well help yourself to a wristband. This is William syndrome and and they and you know some people who had never heard of it before suddenly had heard of it >> and and at at least like for me one of the other events that I've done in Miami and my my son he loves like cooking and baking well both of them. Um they my best friend she has a bakery at a food hall so it's the perfect opportunity and she is she's obsessed with Enrique with both of them but End you know you guys know End um uh and she was like let's just you know do a cookie decorating activity one day and we did a fundraiser there. That's where I actually met one of the um moms that's going to join us tomorrow. She went to camp for the first time this year. Yeah.
um Arabola um they drove all the way from West Palm like they live an hour and a half away from Miami and they drove for that activity and you know it's it's another opportunity that you can meet people create community around yourself. So it's any opportunity like even if you have a friend that I don't know they they do pickle ball do a pickle ball tournament. It doesn't have to be 100 people. It can be your closest you know 10 friends or whatever. Um, and it's there's opportunity everywhere to to not not even like just to fund raise, but like to raise awareness like in in anything that you like. Um, going to the beach, doing a a beach cleanup or anything. Um, there's opportunity everywhere. So, >> I met a guy years ago who uh did a um he was a firefighter in like the the mountains of Montana and Colorado and everything. And um because he's best friends with this family that has uh a daughter with William syndrome, uh he does his own walk and it's just him. But he walks through the mountains and everyone he meets he you know gives them a little bracelet or uh you know he's a firefighter so all the other usually it's a he he usually can rope in a couple other firefighters. So then these, you know, these really ugly looking firefighters, you know, but these dudes are walking through the forest and and they all have William Syndrome t-shirts and stuff on and so there, you know, it's like so any anything can be a fun and not even fundraiser, anything can be awareness.
Yeah. Anything can raise awareness. Um, and so don't, you know, if you have something that you love to do and you think like, hey, I know other people who love to do this and maybe they will learn about William syndrome.
Well, that's when you call.
>> Yes.
>> Um, all right, friends. Um, any last thoughts? Uh, what's before before I kind of tie this one off in a bow?
Anything from you guys? Deep Thoughts.
Deep Thoughts by John Kent >> 8:40. Um, no. No.
>> So, what's gonna happen now is I'm gonna end this stream because I have to reset all of the things again and utilize Zoom. So, anyone on here with an adult with William syndrome who is hoping to join the or wants to join the social club, uh, at the top of the hour in 20 minutes, you're you can click on the, uh, join the Saturday night social club.
You can find that link on uh, Facebook, the social club page on Facebook. I posted it a couple days ago. Uh, you might just have to scroll down a little bit, but I think it's still near the top. Uh, but you can also go to williamshyen syndrome.orgsocial club and just scroll down a little bit and there's a button right there that says join the social club. Uh, Saturday night social club. Um, that's where you're going to want to join. Come back.
And for those of you uh who um have never uh seen a social club or been part of a social club, uh if you don't want to uh join in person, you can join uh by watching uh the silliness and the shenanigans that we are going to get ourselves into um on our uh on this social call. So uh going to wrap it up here and we will be back on in about 20 minutes. Um, so all right everybody, we'll see you in just a little bit.
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