Dia 4 - O papel de uma associação de pacientes

追加: 2026-06-06

[00:00:00]Hey guys.

[00:00:05]Is it warm in there? It's freezing here in São Paulo, but despite it being a holiday, we're very happy to be here representing Brame in the fourth week of my online anthem. And today's topic is Abraham's, it's ours.

[00:00:25]So, I'm Andreia, I'm also one of the directors, and I'm going to call Lídia and Betinha here.

[00:00:36]Good evening everyone.

[00:00:39]Goodnight.

[00:00:39]Is everyone hearing me clearly?

[00:00:41]Hey goodnight.

[00:00:44]Legal. So, I hope you all continue interacting in the chat.

[00:00:51]We're here with, you know, the greatest enthusiasm to at least hear a little bit from you and also explain how the association works, because sometimes people think it's all magic, right? That everything is easy.

[00:01:06]I can only express my gratitude because, out of the three of us, I can say that I'm the youngest in every sense.

[00:01:15]In terms of age, I was the last to join Abraham on that board, because my diagnosis was in 2008, and Bram is an association made up of patients, and all of these patients have a lot of patience.

[00:01:34]And I can only be grateful because, in reality, I inherited a ready-made partnership, right? When I met Bram, it was back in 2008, two months, almost three, after my diagnosis. So, like almost everyone else, I was kind of lost and I just kept staying, you know? I went to an in-person meeting; back then, no one even thought about recording, right, girls?

[00:02:01]No, we started it all, it was Lídia who started it all, and she'll tell you a little more about that later.

[00:02:14]Bet was the president of the association before my terms in office; I'm currently in my third term and will then pass the baton back to Lídia. So, as I said, I joined Abraham as a simple associate, but back then there was no social media, right? What existed was that Yahu group, and to this day I don't know Paulo Guarino, who was the person who said there was going to be this Bram meeting. I was very happy about that. I went there to have the honor, you know, of speaking with specialists, with doctors, with the women from the association. Well, when we got there, the doctor didn't come because he was sick. And then they went. Dr. Marcelo.

[00:03:11]Hi.

[00:03:12]Dr. Marcelo.

[00:03:15]Exactly.

[00:03:15]The only time he didn't show up.

[00:03:19]True.

[00:03:19]An in-person meeting.

[00:03:22]True. That was the only time.

[00:03:25]Yes, he has always been one of our most consistent partners, a doctor we've always been able to count on. He was also the scientific director of the association several times, was n't he? Uh-huh. Yes, yes, I think he was there for about three terms. The first one, when the name changed to Abraham, was Lydia the President, then it was me, right?

[00:03:54]That. Dr. Marcelo was the scientific director during his tenure, then during mine, then during Andreia's, and then there was Dr. Cristina, right? Yes yes.

[00:04:09]And then I think Dr. Eduardo came in on your second visit, didn't he, André?

[00:04:14]Your second term, Dr. Yeah, yeah, he's been in there for over three years already.

[00:04:22]Exactly. He's entering his third year now. So I think we have a lot to thank these professionals who always dedicated their time, never refused to bring information, which in reality was very little, it was just to comment on what already existed, you know, because practically nobody knew anything about it, they only knew a little about the therapeutic resources, you know, things didn't change much, there wasn't much new information.

[00:04:56]And then I joined as a nosy associate, right? I stayed, I stayed, I stayed. I ended up joining the board of directors.

[00:05:07]Meanwhile, social media began to expand, outreach improved, and Brami started to grow as well, because we learned how to do live streams occasionally, even when the music was intense and the sound cut out.

[00:05:24]You'll see it on the channel. I never leave anything unrecorded, like that live stream we ended up not doing because something went wrong, because the power went out at my house and there was no way we could finish the live stream that had barely started. I mean, everything has already happened.

[00:05:43]And I usually say that my tapeworm infection is very much like that, right? Every day brings a different emotion, but today we're here to talk about the association and its growth, and to express our deep gratitude to all the people who have helped.

[00:05:59]And at that last event held in December to celebrate Abraham's 41st birthday, we might be there on the channel too.

[00:06:12]We can thank these and many other people who helped in the consolidation of the association, because let me tell you, it's not easy to manage, as we were asked, how do we manage to guide people and meet all these requests, because it's not just from patients, it 's from patients, it's from healthcare professionals.

[00:06:41]It's a doctor wanting to know some information, sometimes they have a patient case where they can't get guidance in their area, which is sometimes in the interior, in a state where there isn't a referral center, and the association acts as a bridge, and we're there in the middle. But we also have to point out that everyone in the association, with the exception of the scientific director and the current member of the fiscal council, are the only two who don't have mine. Everyone else has everything else. Each one has a different type. Congenital, autoimmune, refractory – there's one for everyone, something for everyone.

[00:07:30]negative, positive. And that's what we're talking about today.

[00:07:35]I think that back in your day, nobody even talked about whether it was positive, negative, or what it was.

[00:07:39]No, no, I did n't have that dextrose test I took, I won't know the date, I won't remember the date because I'm not an AB to have HD. The test was sent to the United States and came back negative because they didn't do it here, right?

[00:08:00]No, it didn't work here. It was the first test I took for anti-auticoline.

[00:08:08]There, the doctors started to think that way because information was also very difficult to obtain. Yes, it was n't that I lacked education, it was that I didn't have a different perspective. I study, my tapeworm has always been quite good, but I can say that I'm not getting anywhere because it takes so long.

[00:08:37]Yes. So, what we're seeing now, including this week's new findings, are studies that, like Dr. Eduardo mentioned in his live stream with me the other day, are showing results.

[00:09:01]So, as I always say, a patient has to be patient. It's easy.

[00:09:06]Definitely not. I learned a lot from those two because, as I said, I arrived last. I was caught by surprise too.

[00:09:16]My tapeworm tripped me up. I thought my life was so solid and peaceful, but then you realize you're walking on hot sand, right? And today we can also be very grateful to social media. Social media facilitates dissemination of information and greatly helps in the exchange of information, which I think is very important. You just can't, let's say, overemphasize the negative aspects, because everyone goes through tough times at some point. There's really no escaping it, but it doesn't happen to everyone either, so you can't scare away the newcomers, right?

[00:10:06]And as I said, I learned a lot from both of them, because they have decades of experience, right? We got there and revealed our age, right? It 's not even good to talk about it.

[00:10:22]So no, we don't put the age. I only put decades, two decades, 20 years only. AND. But what I think is great is that during that time I also saw Bram grow, as I said, when I arrived, it was an association that had a website, but no address, no email, and no phone number.

[00:10:53]So, how do I get in touch with someone?

[00:10:56]Yes, I waited there until one day an invitation appeared in the Yahu group, in the Yahu community, for what was essentially a chat with the doctor who was inside UNIFESP, you know, in one of the rooms, and where I saw a lot of measles. Look, there are more people like me, how cool! But then the doctor himself couldn't go because he wasn't feeling well that day.

[00:11:26]So even doctors get sick, folks. It's not just us. We are all human.

[00:11:33]Today we have social media, we've learned how to do live streams, and things have evolved. So those meetings that used to be only in person started to become virtual.

[00:11:48]And in 2021 we also received a gift because Dr. Ana Paula Paranhos and Dr. Diego de Castro had this idea of creating "My Week," which is really great, bringing together their specialist colleagues from all over Brazil—from the Amazon, the South, the North, the Southeast—and covering diverse topics.

[00:12:15]And we're now in the fourth week of mine. She only took a break because she was doing her doctorate. That's why we stop doing it for a while. But Bram never stopped doing things.

[00:12:31]So, we have to be very grateful for all this growth, and along with that, I ca n't fail to emphasize that in order for us to keep up with this as directors, as association leaders, we also had to train ourselves, because since I joined Bram, I heard from these two that their great dream was to provide training for doctors, because doctors who don't know my conditions can't make a diagnosis, and we provided guidance to patients.

[00:13:07]Wasn't that it, girls?

[00:13:09]For sure.

[00:13:10]But how were we going to manage to do something like that? An association that doesn't have a headquarters to this day doesn't have one, right? How could I manage without resources, without anything? It was complicated.

[00:13:22]But today we are able to, we are even getting support from industry and laboratories, which has helped us a lot. But for that to happen, we, as directors, also had to train ourselves, take a leadership training course, remember?

[00:13:40]Understanding public policy, having a little bit of outreach skills, participating in other events, and securing funding—because it's not easy to create a project, especially for a rare disease—is crucial. It's quite complicated, but we're here.

[00:14:02]And to express our gratitude for all of this, right? Because, as I said, I just took the train that was already ready, put it on the tracks, and gave it an extra push. I just gave him a little tap to keep him walking. I also trained myself.

[00:14:19]After I received my diagnosis, I did some studying, I pursued a postgraduate degree in integrative care and health informatics to better understand how this academic environment works, and it helped a lot.

[00:14:36]And there's nothing better than talking about all of this, right, with dates, with much more authority than I have. Now I'm going to pass the ball to Bet, because Bet was president before me, right? And it was she who prevented the shuttlecock from falling completely, because someone wanted to throw the shuttlecock away, someone wanted to leave the court.

[00:15:04]Betinha, the ball is yours.

[00:15:08]So, taking your cue, right? It all started in that Yahu group.

[00:15:16]And then one day I saw an email from Lidia Costa inviting me to a meeting, right? I said, "Wow, I didn't even know there was an association, but anyway, it's an association of medical technicians in Brazil.

[00:15:35]Then I went to the HC (Hospital das Clínicas) for a consultation with our dear Dr. Zambão and I said to him, 'Did you know about an association?' He said, 'Yes, I knew.'" And will you really like Lídia Costa's?

[00:15:50]You two will get along well. Go ahead.

[00:15:53]I said, "Okay." I went there, and she started talking, you know, about how she founded the association, but that she was alone, that she had no support, that she couldn't count on anyone anymore, and that she had called that meeting specifically to shut it down.

[00:16:17]Then the guy talked and talked, and I stood up and said, "Hi, Lí, I'm Bet, I'm Jambão's patient. He told me about you. I had a dream of founding an association. You have one, why are you going to close it? No, you heard, right? I heard what I said. I'm alone. I said, not anymore.

[00:16:37]You can count on me. You can count on me. We can continue this." From there, we scheduled a meeting at the neuromuscular unit of Hospital São Paulo, where we gathered several people, right? We'll mention all their names here, they all know.

[00:17:00]And that's how it all started, many meetings, there were some meetings, we almost died coming back, right, L? Remember? It really was. We suffered a setback on August 30, 2005.

[00:17:22]We were coming back from a pro bono meeting in Jardins.

[00:17:26]Then there was a meeting at P de Toledo, and then I was going to drop you off at your house in Vila Ema.

[00:17:34]And at the intersection, the car saved us. " By the security center.

[00:17:41]I'm just opening these parentheses so you can see the history we have, right?

[00:17:46]How many stories we have to tell, just you and me, Lia, the two of us, where everything fell into place. Well, and then in those various meetings it was agreed that we were going to make a new statute, to continue, to continue everything. Then I arrived and said: 'Look, I have a proposal here, since we're going to continue all this, why not change the name?' Which is the name of the disease.

[00:18:30]Why? I don't know the Brazilian Association of Multiple Sclerosis Patients. I don't know the Brazilian Association of Amyotrophic Lateral Sclerosis Patients.

[00:18:45]So we could put the Brazilian Association of Masteni and Sila would become Abram. People, why did I say Abram?

[00:18:55]It started like this: 'Ah, Abram, Brahma, we take advantage, order some Brahma,' it became a joke, there was general laughter and I was serious, right?"

[00:19:06]Well, in short, the name was approved, we created the first bylaws in the name of Abraham, which were then drafted in the name of Abrela, copying Abrela's bylaws. And every time they had to change that statute, there was always a paragraph, an article, that mentioned Abrela. Each time I had to go back to the lawyer. Remember, Al?

[00:19:33]It was at the registry office too, right?

[00:19:36]It was a real struggle to get the registry office part in order.

[00:19:42]Yes. But then you would need to register this new statute at the notary's office. We started having meetings, like, you know, minutes of the assembly, registering them at the notary's office, and the money.

[00:20:00]Where's the money to register this at the registry office? Because everyone knows that notary fees aren't exactly cheap. So, at every meeting we passed the hat around, right, Lídia?

[00:20:15]Yes, he passed the hat around.

[00:20:18]We opened an account at Banco do Brasil, where my husband arrived.

[00:20:26]Oh my God, when I remember, I laugh.

[00:20:29]The person said: "Hey, can you issue some payment slips for us to distribute to people? These slips would have a blank due date, the name of the person paying would be blank, just the name of the association and the CNPJ (Brazilian tax ID).

[00:20:47]And one day, he, one day, I owe a lot of business owners from Tatapé, where I lived, who at that time collaborated a lot, distributing them at parties, at pizza parties, and they would put the due date they wanted. And with that money, we started to take off.

[00:21:12]Abra, remember? Remember when the account reached 5,000?

[00:21:17]Wow, we celebrated!

[00:21:21]We celebrated! Do you remember what we did?

[00:21:24]No. Huh?

[00:21:25]Oh, a pizza at my house.

[00:21:28]Oh, right. I remember.

[00:21:30]Yes, we celebrated, my God.

[00:21:36]But, but these are stories for you to see how everything wasn't so easy, but it's nice because we realized this dream, we succeeded, and then André came along and gave us this apartment and social media, which gave us all this, and we got to where we are now." It's today. But it was like this, it was with a lot of effort, a lot of love, a lot of affection, a lot of determination, a lot of help, right? A lot of help. Andreia, Lídia. And another thing I want to record here, before I forget, a lot has happened since then, of course, and I was absent from the association for a while, and I became a grandmother, I moved to another city, another municipality, and I was very absent. And these two never left me out. Even though I wasn't so active, I was always behind the scenes, and they kept me informed of everything. They knew everything that happened. I was never really left out. So it's a beautiful thing to say. I'm very proud to be part of this association with these girls.

[00:23:03]And we are a unit, we speak the same language. And I think that's what made us get to where we are, the respect we have for each other, the respect, the affection, and the value we give to each other, right?

[00:23:25]And each of us knows that it wasn't easy to get here, but thank God we are here. And we still have a lot to do, right? Don't we?

[00:23:37]I hope so.

[00:23:38]Pass the ball to someone. Pass the ball to someone if you want to take this cue. So, just to take advantage of this and talk about the clinical protocol. That's what I'm talking about, achievement.

[00:23:49]We have to talk about good things and things that were hard-won, that weren't the maximum. I end up getting emotional, and I'm like that, right? I end up getting emotional and forgetting things.

[00:24:03]So, the protocol, my stenosis didn't have a protocol.

[00:24:07]If the doctor had to prescribe a certain medication, like, I don't know, they had to use the C for another disease. My stenosis did n't have a protocol.

[00:24:19]And then we started through Cleusa Miguel, a friend of ours, who at the time was a member of Quanitec, and she came to me and said: "But how come you don't have a protocol?" "We don't have one, we don't exist." "No, let's gather the documents." So we started gathering documents and sending them. And gathering documents also required money, because it was photocopies of bylaws, everything.

[00:24:48]Photocopies of bylaws, photocopies of minutes, photocopies of the CNPJ (Brazilian tax ID), of this card, of that card, you know? Mail, because back then it was mail.

[00:25:02]Mail, and we'd send it to her by mail, and then it would come back because a comma was missing, we'd check, a comma was missing, and we'd gather documents, gather documents. It wasn't easy either. It was a process that took, if I remember correctly, about 6 or 8 months. 6 or 8 months.

[00:25:24]When talking about 2009 or 2010, because the protocol was published in 2010.

[00:25:32]Exactly. Because it was published on May 10, 2010.

[00:25:38]See how it's a human hard drive?

[00:25:40]Yes. It was published. Abram's hard drive.

[00:25:44]So, in 2009, you said it right, in 2009 we started gathering documents and it came out.

[00:25:52]Finally, right, that was our great and first achievement for Abraham.

[00:26:02]And this also demonstrates something else, right, Bet?

[00:26:06]Uh, regardless of whether we had experience or not, because none of us had taken any administration courses, had any prior experience with the third sector.

[00:26:20]No, no. At that time none of us had experience. At that time it was all about guts and courage.

[00:26:27]So, even today we are still working hard. That's why I'm talking about this issue of training, because nowadays, despite the existence of social media, social media is important, that's undeniable, but what about face-to-face interaction? And you 're there, eye to eye talking to someone?

[00:26:49]It's necessary. Do you also remember when the law was published on the day of the announcement in Rio?

[00:26:58]Yes. It was, wasn't it?

[00:27:01]Yes, exactly. And anyone from January?

[00:27:05]No, nobody went, there was no budget. Do you remember how we attended to patients?

[00:27:11]I had two landlines in my house.

[00:27:17]One was mine, of course, and one I left to attend to Abraham. And that phone would ring any day, any time, and I She answered.

[00:27:27]Yes.

[00:27:27]Any day, any time.

[00:27:29]Sunday, in the early morning, as long as she was awake, right?

[00:27:36]Yes, exactly.

[00:27:40]So, and that's our story.

[00:27:42]Yes. And what we sometimes say is that people say Bram doesn't do anything, even though we do, and we are very grateful to all those who support us, who understand that this work is not easy, there are also people against it. I won't say no, we don't lie, because all this work, we are now making it clearer to you that it is continuous, it doesn't stop here, it will never stop here, it's open to anyone who wants to collaborate with us, but you also have to be ready to roll up your sleeves and get to work, it's not easy. It's not easy.

[00:28:27]Sometimes people see: "Oh, you're traveling with the association's money." It 's not the association's money, the money is yours.

[00:28:36]This resource comes in to have a representative who goes to the location. We were here in São Paulo yesterday. I was talking to someone, the mother of a teenager with my Tenenia. We were on the phone for ages, she's way out in the interior of the Northeast, right? But how do you get access?

[00:29:00]How do you get a consultation? How do you get guidance?

[00:29:04]We try to do that by phone. A little while ago we went to Recife, it was great. It was packed in Recife, wasn't it, Lídia? It was quite a surprise for us to have so many patients and people interested in learning more about myasthenia gravis, because we always extend the invitation openly. When we get here to São Paulo, only half a dozen people show up.

[00:29:31]Yeah.

[00:29:33]So what's the excuse?

[00:29:36]I have my sia.

[00:29:38]Yeah.

[00:29:39]And what about us?

[00:29:43]When we travel, we usually go in pairs.

[00:29:47]Why? It's not two people just sightseeing, it's two people who are qualified to be there representing the association and all the members who are there. But if one gets sick, the other is usually fine. It's difficult for both to get sick at the same time, right?

[00:30:08]And it wasn't just once or twice that we went in pairs, one taking care of herself and the other... It's native and vice versa.

[00:30:20]Sometimes both happen to be doing well, but that's not always possible.

[00:30:27]So, we have to anticipate even that and count on your collaboration and even encourage you.

[00:30:36]Oh no, not you, Brame doesn't reach my state. Maybe. And why don't you try to open an association in your state?

[00:30:46]Who knows if it's easy or difficult.

[00:30:50]Sometimes opening one isn't so complicated, the hard part is maintaining it.

[00:30:55]We know of other associations that had the same initiative and are struggling to stay afloat, and it's not easy.

[00:31:07]But there are some old-timers out there who don't give up, you know? There are two who encouraged me.

[00:31:16]We, you respect me. No, we are not, we say, there are some experienced old-timers, you know? I say, I'm a young old lady, I am too.

[00:31:28]That's right, that's right.

[00:31:30]We're all over 60.

[00:31:33]Yes.

[00:31:33]And we are, we try to encourage those who have more energy than us to be able to take this forward.

[00:31:46]Also. It's that I live in the three [states/regions] and it never happened, but it has happened before. For example, I think I was president, or you think it was me, when there was that seminar on mestemia at the Chamber, and I was bedridden and you guys went. That's when mestemia disappeared, remember?

[00:32:06]Yes, yes. It was, it was. I got sick, I can say that my mestemia worsened because those were horrible days because of a social media rumor. The medicine disappeared from all over Brazil, people bought it like crazy.

[00:32:26]Yes, the industry was changing.

[00:32:30]That's it. That was 2015, 2016, around then.

[00:32:35]It was, right? Around then. So, these are things that happen and sometimes people don't even realize it, because normally the patient just wants to know about their rights, they want to know about the medicine, they want to know about the news.

[00:32:54]But do they participate in research when we invite them? When the doctor invites them, when we have a meeting to chat, to talk with them, we also managed to get an occupational therapist now, things that We're occupational therapists.

[00:33:16]That's right. It's not that I'm not using the drip tray because I don't know where I put it, you see? Ah, that 's it, so we always try to be transparent because we experience firsthand what every patient experiences, right? Regardless of being in São Paulo, the difficulty is the same anywhere. It might be a little more here or there.

[00:33:43]Sometimes even far away, it's easier than São Paulo. Once I was horrified when I spoke to someone from Alagoas and she said that the appointment took two weeks for her to speak with the specialist. I said: "Should I go to Alagoas or not?" "Here in São Paulo, I can't."

[00:34:07]So it's complicated, it's difficult, but we encourage it.

[00:34:13]Bring information from your city, from the state where you are, because we can't guess.

[00:34:21]And only with this data can the association do something about public policy.

[00:34:29]And speaking of policy, you see there are three here, right? Each one is better in some sector of something. I'm kind of a jack-of-all-trades, I get involved in each one, right? I see and so on. Bet is our human hard drive, if you want information, data, it's with her.

[00:34:50]André Modesto. André Modesto, very modest.

[00:34:55]And Lídia, I can say that she is our representative for public policy.

[00:35:01]She's been there for a long time, it was her idea to create the association and now the ball is in her court.

[00:35:11]Yes. Ah, I started doing public policy because of the association, right? It was created at a time when the meinão disappeared from Brazil and Dr. Zambão, the doctors from the HC asked if I could send mestinom to some states. So I went, right? I did a A pretty little wooden box, I'd put the vials in it and send them. How did I get this Mestinon? I knocked on the door of the lab, which at the time was Rocha.

[00:35:57]And the manager who answered said, "Look, create an association because it's easier for me to donate medicine to you that way." Okay. I left the lab, passed by one there and the Butantan Institute, got off there and told the people who were there, I need to create an association for this, this, this. But someone has to pay for the registration and they paid. And that's how the association was born.

[00:36:32]The first thing the association achieved was a free bus pass, okay? With a driver who guided me at the time here in São Paulo, it was TMTC and they said I wasn't entitled to it.

[00:36:53]I sued CMTC and from then on, people with my tapeworm had the right to a free bus pass.

[00:37:07]But then the people with my tapeworm abandoned me, they did n't want to know anything.

[00:37:16]And I started swimming with people with disabilities, people with physical disabilities. I got the... at the time AMB, right? I put it in a drawer.

[00:37:31]Until one day the Federal Revenue Service blocked my CPF (Brazilian tax identification number) and I went there to find out what it was. It was because of the association. I had never filed income tax, never done anything, right? It was just sitting there in a drawer.

[00:37:54]Then the guy advised me and said: "Well, if you're not going to handle it, call a meeting and close it."

[00:38:04]Then Bet already told me that I called the meeting, right, to close it and she didn't let me. Actually, Abrame is kind of like the mother of Abraame, because if it weren't for her, we wouldn't be here. And once or twice I wanted to throw in the towel, because we work all the time and we receive a lot of criticism, a lot of demands.

[00:38:44]But when you hear from a patient, look, you don't know how much you helped me, you forget all that, okay? So, today, we do this, this counseling, we try to give guidance, right, to the person.

[00:39:13]I take care of congenital cases more, because I am... Congenital, this was discovered in 2005.

[00:39:23]And Andreia and Bet end up working with the autoimmune myasthenia gravis, which is their case. It doesn't mean they ca n't advise a congenital myasthenic patient and that I don't know how to advise an autoimmune myasthenic patient.

[00:39:47]The rule is the same.

[00:39:50]When you go to see a doctor, when you need a report, you go to get your health card, your transit card, there are the little things we have to give you, you go to get medication, people ask for absurd things. I don't know if you remember once when a patient came back when we were on duty at São Paulo Hospital and they asked for a dementia scale.

[00:40:30]Dementia.

[00:40:31]People, I haven't forgotten that. What do you mean? A dementia scale for a myasthenic patient. I remember telling the patient, tell them to go back and say that they're the ones who need a dementia scale, right?

[00:40:50]So, we're always ahead, always We're looking to improve the laws, actually, to enforce the law.

[00:41:05]We're always striving for improvement.

[00:41:11]And now in August, we're going to hold the first international congress for doctors. So, look where we've come, bringing in a professional from abroad to guide our doctors in the management of the disease and this whole bunch of new medications, how to use them, and in which patients to use them. And, look, if you're there and you have congenital heart disease, especially if you're a doctor, there are studies starting, so we need to participate, because congenital heart disease does n't have any medication that's specifically labeled as congenital heart disease syndrome, so we're just piggybacking on existing treatments.

[00:42:24]So what was autoimmune disease before the protocol is now congenital heart disease. Today we have to piggyback on existing treatments.

[00:42:37]Another thing I want to mention is that many people are contacting me about the sunflower cord from Abraham.

[00:42:49]We received those cords, not a large quantity, so we decided that only those who attended in person would receive one.

[00:43:07]You say, "Oh, but I live in Recife or Porto Alegre, okay?" You were watching the meeting on YouTube, are you already registered with Bram?

[00:43:26]If the answer is yes to both of these questions, we can send it while we still have it, but we need you to register.

[00:43:45]Because when a laboratory comes to Brazil, it wants to know the numbers so it can decide whether or not to invest in patients in Brazil.

[00:44:02]Uh, this set's congenital lab, I was at the first meeting.

[00:44:11]Andreia had some kind of problem.

[00:44:14]And I went alone, and the person in charge asked me: "How many of you are in Brazil?

[00:44:25]Where are you located?

[00:44:27]What is Brazil's public policy regarding medication?"

[00:44:37]Luckily I knew, right? And look, that was about 2 or 3 years ago, after the pandemic.

[00:44:49]So, you see how important it is for you to register with Abraham.

[00:44:58]And not only for that reason, right, Lívia?

[00:45:03]No, no. I mean, not only for that reason.

[00:45:07]Normally, when we try to either enforce what already exists in the law or try something new, this question is inevitable: How many measles patients are there in Brazil and where are they?

[00:45:25]The Abraham registry is there. Many people can't register, sometimes it's just an internet problem, because it's a complete registration, and it's just the registration, people. The app has nothing to do with it. The famous card that a lot of people look for has nothing to do with it. The registration is the registration. It's just to know who that patient is, where they are, where they go for their treatment.

[00:45:55]His treatment, how long he's had the symptoms.

[00:46:01]It's a very brief summary of this patient's history, right, Andreia? The medication and its use, right? And what happens?

[00:46:11]Well, for our own safety, we need to know if this patient is actually a comasthenia patient.

[00:46:21]I say this because before, our registration was shorter and, let's say, extremely informal.

[00:46:30]Anyone could go in there, put in their data, and there were many people who didn't have half-price tickets, they registered just to get the famous Bram card to pay half price at the cinema, to get into a priority line, which also has nothing to do with the parking card, which are other things, to get on the bus for free, all of that is on the Bram website, but people don't look for the information.

[00:47:03]Each place sometimes has absurd differences like that. In one place, to get the exemption from public transport fares, proof of income is required. In another place, it's not.

[00:47:19]There are municipalities where it's only for the person, others allow a companion.

[00:47:27]One, like the other day, someone told me, "Oh, I have a perpetual ticket," and I said: "Wow, what?" "What's an eternal ticket?"

[00:47:37]That was news to me. It was permanent transportation.

[00:47:43]I have one too.

[00:47:45]I don't. And do you know why I don't have my transportation as a person with a disability?

[00:47:53]It's there, São Paulo, SPTrans.

[00:47:57]I have practically three processes there: the expired ticket, the ticket that's still in progress, under analysis, a ticket that was canceled, and due to a lack of documentation that I had sent, I know the whole thing dragged on so much, they didn't want to accept what the doctor filled out because it was computer-based, it had to be handwritten, it had to be manual.

[00:48:31]They didn't accept a form filled out by computer and with a signature recognized by GOVBR.

[00:48:42]So the problem isn't with you.

[00:48:45]We also go through this. You know what I did? I don't worry about it anymore, because it wears me down, tires me out, and worsens my tenesia. Isn't that what we say?

[00:48:56]Today I have my old lady ticket, I'm there, I got a senior citizen's ticket, done, but it's been three days, it's in my hand, it's over.

[00:49:04]So, we have to learn to do this. Also. Not everything is my fault, nor are all the laws that exist meant to benefit everyone in a very easy way.

[00:49:18]We have to read every line, every comma, what's missing.

[00:49:25]Sometimes it's a poorly filled-out form, some missing document that the person can't access, and when they try to talk, right?

[00:49:36]Not to mention, right? Not to mention. Remember having the rights to the extension to buy the car, which isn't through me?

[00:49:48]Good point, Roberto.

[00:49:50]Good point. So, people say it 's not myasthenia, right? It's the symptom that myasthenia presents, right?

[00:50:02]Paralysis, paraparalysis, paraplegia, tetraparesis.

[00:50:08]It's in the law. The law doesn't say "the," it talks about the symptoms you present, right? The way you present it, the way you present it, the form of tetraparesis, paraparesis, form, right? And people don't understand that either.

[00:50:31]Now let's laugh a little.

[00:50:33]Hmm.

[00:50:33]Let's.

[00:50:34]It's my asthenia's fault, right? You... Yes, you sneezed... On Tuesday, I was going into a funeral at a church, and this blessed thing was in my hand, you know?

[00:50:51]Texting a friend who was lost, texting me to find out where I was. There was a little step, like this.

[00:51:03]Of course, I didn't see the step, obviously, because my face was glued to my phone. I took such a big tumble, it was awful. I'm still in pain because of it. Was it my fault? No, no.

[00:51:29]I even got up by myself. It was my lack of attention.

[00:51:35]Sometimes I get scolded on social media because of this. Listen, my phone isn't to blame for everything. Of course, it's to blame for a lot, but not everything. Many times the fault lies with us, as was my case on Tuesday.

[00:52:03]Many times my phone is my walking stick, right? Ah, my walking stick. I use Esmeralda.

[00:52:09]People know my walking stick, you know. But when I fell, Esmeralda fell, everyone fell. Almost. I gave people a heart attack because a white-haired lady with a cane fell.

[00:52:28]How absurd, right?

[00:52:32]So let's stop blaming everything. Poor thing, she's even guilty of things she's not guilty of, right?

[00:52:46]Yes.

[00:52:46]So, that was just for laughs, okay?

[00:52:49]I had some intimate contact with the floor and my face isn't even bruised, it did n't turn purple.

[00:53:03]Well, it isn't, but it's coming, right? Yeah, she's already asleep. That's a relief.

[00:53:12]Quite cheeky.

[00:53:16]So, folks, today was also to explain to you how the association works. People asked: "Oh, how do I... something I think everyone has experienced, look, I'm passing through São Paulo, I want to go there to see a doctor or I got an appointment, can I stay at your association?"

[00:53:43]So, just to reinforce, Abraham doesn't have a headquarters, it does n't have a place where it can attend to people. When someone comes from outside, we are very happy to take them in. A coffee. We arrange to meet at a shopping mall, somewhere public. If she's in a hotel, she's there, right? And we want that contact, which I think is important.

[00:54:13]And it's not because there's no headquarters that the association doesn't work. You're seeing that much of what has been achieved is because of Bram.

[00:54:22]The government didn't guess that a medication was arriving, didn't guess what the patient needs to access it. So, we manage to make that connection. Most likely now, and still in June, I'm trying to schedule a live stream with Dr. Betânia just to talk about rights, which, wow, is a huge live stream, full of things.

[00:54:51]And people also have doubts about how to register, it's written and we put it there, right? Just go to the Bram website, it's all online. I'll put it here again, I'll leave it in the video description, right? Because it's extremely important that we know where these people are, because sometimes it's that patient registration from, I don't know, the interior of Goiás, some doctor is treating them or He's in some kind of referral center, and we know that. There's a database.

[00:55:32]And the other reason, which I'll mention here, and everyone knows this breaks my heart, is that we don't have the app anymore because we don't have funding. And this funding isn't just about creating a Google account and putting it there. It's confidential data, it's patient data.

[00:55:54]I think that, just like with a bank account, nobody wants their data distributed around with easy access.

[00:56:04]So, everyone who registers with Bram has their data protected, yes.

[00:56:10]Even the sponsors, as happened in the last registration, didn't have access, only the association, because it's responsible for that. If there's a leak, anything, it falls on our shoulders.

[00:56:27]So, today we talked more about the association, and we also want to get much closer to these patients, because you saw that the channel is full of live streams with doctors, dentists, psychologists, various health professionals, and also patients.

[00:56:50]So, to end this week of mine with this chilly weather that I think is affecting the whole of Brazil... Here in São Paulo, things are tough. Hmm.

[00:57:01]Uh, even in the middle of a holiday, tomorrow I'm going to invite everyone to participate in another really cool live stream, and this time we're going to talk about a topic that's also extremely common, right? I think especially women ask: "Can I get pregnant?"

[00:57:28]What happens during pregnancy? Am I going to have a child? "What's going to happen?"

[00:57:33]So, tomorrow I invite everyone to watch a live stream, I can say from the heart, where Betinha will be sharing a little about her experience since she received her diagnosis, which was during some very delicate moments in her life.

[00:58:03]And today she's a grandmother, she got married, had children, and wasn't content with one, she had two, right? She has a granddaughter, she's still active, when she can, she dances, and she'll be talking with Carla Prata, who also helps Brâmia spread the word, bringing light to those who are a bit lost. I do n't know what's going to happen, because I have my own [family/family]. She also has one, she's also a mother, she's also an influencer now, and she's always active. So I invite you to be with us tomorrow so we can end this week with, you know, a lot of celebration, because this year is being, I can say, the year of my [family/family/etc.] for the association, for the patients, for the healthcare professionals, and wait for it! There are some exciting things to come, because August will be quite eventful, right?

[00:59:13]Yes, we'll definitely be active in August, both to the delight of patients outside of São Paulo and to the healthcare professionals who want to improve their skills.

[00:59:34]So, to give you a taste, at least of patients speaking patiently, we'll learn a lot from these two women.

[00:59:44]I'll leave the invitation for tomorrow, and you may have noticed that at the beginning of our live stream we only mentioned that the three of us are directors of Bram without official titles, because we're still doing the musical chairs.

[01:00:03]So, one of us, the president, becomes the financial director, the financial director becomes something else, and the "something else" becomes something else entirely. However, all these things are done collaboratively.

[01:00:22]Never, at any point, even before I joined, did anyone have the final say.

[01:00:32]One would override the other. It was never like that.

[01:00:36]Betinha herself said that for a while, when she became a doting grandmother, enjoying her granddaughter and all that, we know this. Lídia will agree with me. She was tormented because she She couldn't participate, she couldn't divide her time. Absolutely.

[01:00:56]True. True. It wasn't. True. It wasn't easy. It wasn't easy at all. It wasn't easy, you know, even a little bit like, "Oh, why am I not there?" My God.

[01:01:06]Because even so, everything, everything that Abraham decides, creates, does together.

[01:01:16]One conversation with another. The scientific director, he seeks out his peers, talks to us, and we talk to them too.

[01:01:25]Today we have more people joining the board.

[01:01:32]So we have Iris, who's in Curitiba, and it's not because she's in Curitiba that she doesn't participate. Everything we do here, any project, anything, she knows about it.

[01:01:45]Regina is from São Paulo, but she also joined. And you can see that in the last meeting we had here in person.

[01:01:56]So, Abraham has always been a collective effort, everyone has always been united. And in this unity, we also need the associates, even if they aren't associates, but become an associate, it's free, you don't pay, but you receive. We receive a lot. Everyone wins together now, so I think, right? It's worth highlighting, Andreia, that just because there isn't a fixed monthly amount doesn't mean people can't help us.

[01:02:31]Yes.

[01:02:32]Look, there's someone who deposits R$10 every month.

[01:02:40]True.

[01:02:42]And it makes a difference.

[01:02:44]True. And it's been a long time. It's been a long time. It's been little by little.

[01:02:54]For years. If everyone did that, yes, it would make a difference.

[01:02:59]I told someone once that if everyone did that, I've also said that before, they wouldn't have financial problems.

[01:03:10]I've also said that before. I've also said that before. Calling someone to Bet who had a request for R$10.

[01:03:20]Yes. Yes. That's right. So, uh, think about it, look, you can't do 10, you can do five, put in five.

[01:03:29]Exactly. Little by little the hen fills her crop.

[01:03:34]Yes.

[01:03:35]And also, uh, helping to reinforce all of this.

[01:03:42]Recently we held an event in Recife.

[01:03:45]Yes.

[01:03:46]And people from other places asked: " Why don't you come here?"

[01:03:50]Because there's a lack of resources.

[01:03:52]Hmm.

[01:03:52]Just because. Yes.

[01:03:54]If there's an opportunity, if you're able, because you need travel, accommodation, the professionals who will be speaking, they have to be available, yes. There has to be a quorum, there have to be people to attend. So, in Recife we ​​did it inside the HC (Hospital das Clínicas), it wasn't in an external place, you know? It wasn't anything extravagant, but it was possible. So, if in your city, if you have some kind of way to talk to someone, go ahead and invite them, maybe they'll invite you and we'll go.

[01:04:41]Whenever possible we go.

[01:04:44]Recently Lídia and Iris went to Belo Horizonte, soon I'll go too.

[01:04:52]So, when there's an invitation and the possibility, we go.

[01:04:59]And it's not because we don't want to leave São Paulo, it's because, in fact, we're short on money. And those R$10, R$5 that keep trickling in. Imagine if we had at least 1000 members giving R$5 a month. A month, I'm not talking about giving 50, 100, five. If you have 1000, we have 5,000. That's enough to pay for a plane ticket and accommodation.

[01:05:31]Just think about it. Yes.

[01:05:33]And for those who asked, here it is, I put the Bram registration address on the screen, right? This is the link. Just go there and register. It's free, you don't need to pay and we won't charge anything.

[01:05:49]Yes. Okay?

[01:05:51]And tomorrow, don't miss the channel, we'll be here at the same time.

[01:06:01]Bye, everyone. Good night.

[01:06:03]Bye, everyone. Good night.

[01:06:06]Good night. See you tomorrow.