Episode 2 Transcript: Fulfilling a Promise to Leave a Legacy of Hope: Inside the Icla da Silva Foundation

There’s a Lesson in Here Somewhere Podcast
Episode 2 Transcript
Guest: Airam da Silva, President, Icla da Silva Foundation (https://icla.org/)

There’s a Lesson in Here Somewhere is a podcast hosted by Jamie Serino and Carlos Arcila that features exceptional people that have compelling stories to tell. Whether it’s a unique perspective, an act of kindness, an inspirational achievement, a hardship overcome, or bearing witness to a captivating event, these are stories that must be heard, and from which we can draw important lessons.   

In episode 2, discover the inspiring journey behind the creation of a foundation that has impacted countless lives. Airam da Silva, President of the Icla da Silva Foundation (https://icla.org/), shares the moving story of the foundation’s origins and its remarkable efforts to provide essential financial and emotional support to individuals and families in need of bone marrow or cord blood transplants. Watch the episode here, listen to the audio version here, and find the unedited transcript below. It’s an emotional story that we hope you’ll find informative and uplifting.

You're listening to. There's a Lesson in here, Somewhere, a podcast featuring compelling conversations with exceptional people. Whether it's an inspirational achievement, a hardship overcome or simply a unique perspective, these are stories we can all learn from. Here are your hosts, Jamie Serino and Carlos Arcila.

Jamie

Hello everyone and welcome to. There's a Lesson in here Somewhere. I'm Jamie Serino.

Carlos

And Carlos Arcila.

Jamie00:39

And we're here today with Airam Da Silva, who is head of the Icla Da Silva Foundation. I met Idem when I was in college. I remember he walked in the room and there were a group of us that had already lived together. He walked in and he was new. We had a chess point set up. None of us really were good chess players, but we just had it there. He said oh, you play chess, great, do you want to play? So someone I forget who said, yeah, I'll play and I don't beat them in three moves, yeah. So then he was like does anyone else want to play? We're like, no, no, we're good.

01:19

So then he taught us that move that three move win. He taught that. He taught us that. And he taught us that move that three move win. He taught us that. And he taught us how to defend against that. But he still was the reigning chess champion of our room. So that was good and that was helpful. But also in meeting items. So early on in college he was already involved in this foundation that his father had founded and we're going to learn more about that foundation and it helps people that are going through bone marrow transplants, that need bone marrow transplants, and we'll learn more details there. We'll learn why his father formed the foundation and then why Idom then took it over, and they're doing some great, great work, and we'll hear a little bit more about that. So at this point I'd like to turn it over to you to do a more complete introduction of yourself and tell us a little bit more about the foundation.

Airam02:14

Thank you, jamie, for that introduction and great memories from college. Thank you for bringing that up. It's a pleasure to be here participating with you guys. I run the Equalleta Silva Foundation, which was founded by my father After my sister was diagnosed with leukemia back in Brazil and the only hope for Q was a bone marrow transplant and we had to sell everything that we have and come to the US to try to save her life, and I'm happy to share a little bit more about this story and where we are today.

Carlos02:53

How old were you when this happened?

Airam02:56

I was 13 years old and my sister, was two years younger, was 11. Oh goodness, I was two years younger I was 11. Oh goodness.

Jamie03:06

So then at that point, your father, I think he felt like the best treatment was going to be in the United States.

Airam03:15

Yeah, so the doctors told us she just go back a little bit. She was taking dance classes and after one of the dance classes she started feeling pains in her legs and we thought it was just because she did a lot of exercise that day. We went back home, but in the middle of the night we woke up with her screaming in pain. My parents took her to the emergency room and after a few blood tests and a few days she was diagnosed with leukemia. So my parents decided to.

03:47

We live in a small town in Brazil, so we decided to go to Rio de Janeiro, sao Paulo and other cities that were more advanced in medicine and they confirmed she had leukemia and the only cure would be a bone marrow transplant. Both my brother and I were tested, but we are not a match. The siblings have a higher chance of being a match. And then after that my father learned that in the United States this was back in 1989. So in 1986, they had started a volunteer bone marrow registry for patients who do not have donors in the family. They could search that volunteer marrow registry. So the doctor introduced us to a doctor in New York and within three weeks of her diagnosis my parents sold everything that we had and we came to New York to try to find her a match in the National Registry here.

Carlos04:48

Wow, what did you like? Can you give us a little bit of background, maybe like a picture of how it was in Brazil? I mean, you know you had your family there, obviously, but was your you know your parents like, were they working for a company? Did they have like their own business? Or like what was that? Like Like going through everything?

Airam05:11

right, yeah, well, first my father was one of the very successful chemists in the sugar and alcohol factory in Brazil, very well paid. In the states where we were, we lived a very comfortable life. We used to live by the beach and going to private school, and this was all a big surprise for us. And even though we had to sell everything that we had, all our family and friends started a campaign. I started a campaign, a fundraising campaign, to raise funds. My mother and I. We stayed back. After my father, my sister and my brother came to continue with the fundraising campaign to raise more funds. We knew how expensive the treatment was going to be here, so it wasn't a national news and a national campaign started to raise as much funds as possible, which we raised about $150,000, which we probably know it's not enough for a cancer treatment. But my father always said that those are different steps. First is to find her a cure and treat her. Then we worry about how we would pay for that treatment.

Jamie06:25

Right, and so then, what was the situation like in New York? And they came to New York and at the time, and just in general, it's difficult to find a match. So can you tell us a little bit about that?

Airam06:36

Yeah, first we did not know English, but we came to Memorial Sloan-Katharine Cancer Center, which was one of the leading hospitals in the world doing bone marrow transplants. Again, the National Registry started in 1986. This was 1989, three years later. So it was in the beginning stages of the bone marrow registry and we had to find out what she really needed, to find out if what she really needed. And the doctors here confirmed that only a bone marrow transplant from a donor not in the family, because there was no match would save her life. And unfortunately there were only 89,000 donors in the National Registry here and most were Caucasian, not diverse. So her chances of finding a match was very slim as well.

07:27

So the doctor searched the registry and confirmed that there was no match in the registry. So what she said is that, you know, the best chance would have been within a Brazilian, within the Brazilian community, because we are more likely to match someone from the same racial and ethnic background. Let's do like the same with hair color, eye color. So we did not know. There were so many Brazilians in the US. And now my father said you know well, we need to recruit more Brazilians here. So he went to the Brazilian embassy and consulate and asked them for help. And that's when one of the employees said that he was a member of a Brazilian church in Newark, new Jersey, where he could start there by organizing blood drives and bone marrow drives to try to find her a match. And that's what they did for about two years and recruited thousands of donors, not only blood but marrow but unfortunately a match was not found.

Jamie08:27

And so your sister at 11, diagnosis. So then, and her health was deteriorating over time, I would imagine.

Airam08:36

Yeah, as she was here, you know, the leukemia advanced and she had to receive high dose of chemo. You know that's when she lost her hair, which she had a kind of curly hair, and one of her things that I remember when she was saying was that you know, that was her chance to get a wig, that she had straight hair, because she always dreamed of having straight hair. And one thing she always had a smile on her face, no matter what was going on, so she had to get it. She got this wig as a present, but she always, always, she was always very positive.

Carlos09:12

But unfortunately the disease was progressing and her health was deteriorating. Yeah, was this the first in the family? Yes, that's uh. So then you so then when you came and I know that the that newark has a big brazilian community, so I think that that's um, can you expand a little on that? Like you know the you know I think you need to be involved very much so and you know you need to go out and kind of visit the community, and how was that campaign like?

Airam09:49

Yes, I remember every weekend we were carrying boxes of, you know, consent forms and material, educational materials that was were provided to us by the New York Blood Center at the time because we partnered with the New York Blood Center to do those blood and marrow drives. And we were partnering mostly with the Brazilian churches, because that's where we have our community, joining on weekends and then visiting different churches making presentations, sharing her story, and she was always present with us. Of course, the Brazilian newspaper got involved and expanded the campaign to other states as well, especially Boston and in Florida, with efforts to try to recruit more donors. And the more donors we were recruiting, we thought, the higher her chances. The good thing is that we learned that some of those donors, even though it was not a match to her, ended up being a match to other patients and they were being called to donate for other patients.

10:47

And even though she was only 12, she was mentioning that when she was cured from leukemia she wanted to start a foundation so she could continue this work, because she saw that by going out to the community sharing her story, asking others to join and participate, she was saving other lives. So she was starting to think about others other than herself and she saw when a man from the Brazilian consulate, for example, donated his bone marrow, he registered for her by donating his bone marrow to an 18-year years old college student in Seattle Washington. So that motivated her and she said I want to start a foundation on some cure, to continue this work so I can save my life.

Jamie11:34

Yeah, so she and your father and you, your whole family, you were already starting to do the work of the foundation, just by trying to find the match for her, and unfortunately not successful, but you were saving lives, basically.

Airam11:50

Correct. So unfortunately it got to a point that she was. Believe it or not, we used to live on Roosevelt Island. For those who know, it's a beautiful island near Manhattan which is closer to the hospital. We did not have to take subway to get to Memorial Sloan, we could take the beautiful tramway and she was rollerblading after going to school. She was still attending school on Roosevelt Island and then she came home she was out of breath, you know out of breath and then she was taken to the hospital and then that she started having difficult breathing and then after biopsy, there was liquid in her lungs and the doctor detected that leukemia had expanded, you know extended to her lungs, and within 24, this was late in the day, four or five o'clock now, 5 am the next day she passed away. So she was from because the leukemia really spread out and she did not resist. So, even though she was living a normal life, smiling and rollerblading with her friends, she knew that with her wig that she was very happy with. Unfortunately, now the leukemia took over her life.

Jamie13:02

And so you know, for anyone that's a parent, you know hearing, hearing something like this, it's, it's like you know, the sort of nightmare scenario having a child go through this. How did your parents deal with this and how did they react?

Airam13:20

Well, even today, 32 years later, my mother had a very difficult time. Oh, because of religion has helped her a lot, but, of course, being the only daughter, the only girl you know but my dad you know through the efforts and to fulfill her dream, that she always wanted to start a foundation to help others. To start a foundation to help others. As we were now taking her room apart, there was a note that we found that said mom, I'm doing well, Help my friends. And she always mentioned that her friends in the hospital was the one that she wanted to help. So that was the motivation to start the foundation and that's where my father felt that it was time for him to dedicate this time.

14:07

Also, we went back to Brazil because he wanted us to return to Brazil, but when he came back at the time, it was a tape recorder machine. On the phone it was full of messages of other families asking us to do drives for their son or daughter as well, who were looking for a match. So a number of things that she always mentioned, even though she was 12, that she wants to help other patients. We saw that this man from the Brazilian consulate donated bone marrow at the time and saved a life, and the recipient is still alive today. He's a grandfather, he's still involved with us, volunteering, speaking for us, and also the note that was found in her room. That was the main motivation, of course, to continue the work that she always wished to do once she was cured.

Jamie14:56

That's really powerful. And so, then, that inspired your father. And, like I said, you were all already doing the work, work. And so then, how soon after did he officially launch the foundation?

Airam15:09

yeah. So she passed away on june 21st 2001 and the foundation established and received the 501c3 non-profit status on june 22nd 1992, exactly one year after she passed away so you mean 2002 or she passed in 91 she passed in 91. The foundation started in 1992.

Jamie15:35

gotcha. Um, so how did the foundation? Because I know I'd like you to take us through how it has changed, but can can you talk a little bit about those early days?

Airam15:48

Yeah, so we continue to pay awareness and education in the community about the need for more bone marrow donors because there were so many other patients who were still looking for a match. There were so many other patients who were still looking for a match and more and more donors were being added to the registry and more patients were receiving now a bone marrow transplant that they needed. And, of course, united States bone marrow registry and we became an official partner creating awareness and education about the need for bone marrow donors.

Carlos16:42

And was that like a full-time committed role with your father and those involved? Or was it a part-time thing becoming full-time thing?

Airam16:56

Yes, so initially he was just a volunteer. My mother was working by then at the Brazilian Consulate in New York and my father was a volunteer for many years until, of course, we had this partnership and we started to receive funding to continue the work that we did and through fundraising events and activities that we started to do that, he started to become part-time and became full-time, but he was the only employee working with volunteers for all that time, until I was done with my graduate school, that I joined the organization full-time together with him to continue the work that we were doing in 2001. 2001. In 2001.

Carlos17:43

2001. So, when you have graduated, what were you looking to do from a cottage perspective, like, were you looking to go into something and then this was your calling? Or did you know from the very beginning that you wanted to do that and that?

Airam18:01

you were trained to do that, yeah. So because of that experience, my dream was always to become a doctor and that's why I went to Binghamton University and that's where I met Jamie. My degree was biology, leader, mining economics, and my plan was to go to medical school. But now, as I reach my junior year, senior year, in college, and throughout throughout my college years and Jamie helped me many times through bone marrow drives and putting flyers together to organize a bone marrow in college I noticed that there were so many doctors out there and that was not the reason my sister passed away.

18:40

She passed away because there was not enough donors, not much awareness and education in the community. So I felt that what I really wanted to do was to recruit more donors so the doctors would have the tools to save more lives. And with that, that's where I applied to go to New York Medical College and got my master's degree in public health York Medical College. And got my master's degree in public health because my desire was to work in the community to really create more awareness, education and increase the diversity and the number of donors in the registry, because that was the reason that my sister passed away.

Jamie19:20

And so could you tell us a little bit about the progress that was made, not just by your foundation but just in general, as that donor pool grew and grew over that time?

Airam19:32

Yeah. So after I joined the organization in 2001, we worked together, my father and I, to grow the organization to become the largest recruitment center in the United States. We are adding the largest numbers of donors in the country. We expanded through all the states. Now we start with Boston, new Jersey, florida, california, texas and Puerto Rico, especially in cities that were very diverse, because diverse makes a player big role, as I mentioned before.

20:02

Because diverse makes a play a big role, as I mentioned before and then, and of course through the efforts of Be the Match and all the other registry, the number of donors grew and the chances of patients to find a match continue to improve.

20:18

But also through advances in medicine and other types of transplants and medications, patients now have a much greater chance not only of finding a match but also, if my sister was here today, she could receive a bone marrow transplant from my mother or my father, because nowadays it doesn't have to be 100% match Through the advances in medicine and as well as the medications that are out there, there are so many different treatments that she could have received that treatment and with hopes of being cured. So we have many patients now that we have been working for over 10 years that recently as recently as two years ago and last year they now have been receiving a transplant from their parents and they are doing really well. So that's fantastic that the advances in medicine and that continue the diversity of the registry. However, not every patient has a parent or a sibling or someone who could donate. That is within the age limit to donate as well, so that's why there's still a need for people to become bone marrow donors.

Jamie21:31

Yep. So what was it that changed? Do you know, it's probably highly technical, so I don't want to put you on the spot, but what was it that changed where you don't need to be a perfect match anymore?

Airam21:46

Well, what you're really doing with a bone marrow transplant is that you're destroying the bone marrow of the patient and you're finding someone who's genetically matched it's called HLA human leukocyte antigen that they will be receiving those cells from the donor and the body has to say, oh, those are my cells. This is not an infection, that's not a bacteria that we reject. So now, through medicine. Of course it's much more complex than I'm going to explain, but the doctors are able to do a few things. One first they are able to select only the cells that are a match. So they remove the cells that are not a match, but also they are medicine. That medication that avoids that.

Jamie22:30

That rejection will help boost this immune system of the patient, and with the new bone marrow, it helps rebuild the immune system of the patient okay, so, yeah, so they have the technology to actually go into the bone marrow and remove the stuff that would get rejected and keep the stuff that wouldn't. That's amazing, okay. So then, with that development then your foundation then began to shift because, although you said recruiting donors is still paramount, it's not as critical as it was. So then your foundation begins to get involved in other things.

Airam23:13

Definitely 2021, of course, right after COVID, and COVID made all of us have to work to make sure that we are able to recruit donors online, as many things out there and being able to reach a very different audience because we could not be at college campuses was a big change for us. Also, it's very important that we get young donors. The younger the donor is, the better outcomes are for patients. The donor is, the better outcomes are for patients. So with COVID, we could not be out there at corporations, especially campus known as campus. So we, the National Register, really developed the ability for people to join online by sending a swab kit by mail and mail back. But also the need for donors was not as great to be out there in the community. There are other reasons, such as when a donor join online, they are more committed, because when a person donates through the swab kit to join the registry, it's just providing that bone marrow type. They are not donating yet and that person might be called only 10, 15, 20 years later. So we learned that by joining online they have to wait until the SWAT kids come back, come home. They have to do it, they have to send back. So the commitment of the donor, which is very critical, was much higher. So there were some changes where the National Register decided to focus a lot online in specific groups. There was a decrease in age. At the time we used to recruit donors between 18 and 60 years old. Now it's between 18 and 35 years old to be able to join the registry. So with that change into 2021, the organization is no longer in partnership with Be the Match to recruit donors.

25:07

But we learned that many patients now were able to find a match and many patients can receive a transplant. But there were other barriers to a number of patients and those barriers were financial barriers. We see that a single mom with two kids and one is diagnosed with leukemia or a disease that require bone marrow transplant, or the mom is diagnosed with a condition she has to stop working and when she stopped working, with a child in the hospital being treated for bone marrow transplant, she still have rent to pay, she still have the transportation, no meals, no expenses. So we found that many patients had that barrier, even though they had a donor, they had a transplant center, they have the best doctors to treat them, but the barrier is that they could not move on with transplant.

25:57

Our patient needs to make sure that they have a clean, safe home to return after a bone marrow transplant, because in a bone marrow transplant, because in the bone marrow transplant they are destroying the entire immune system of the patient. So we have to make sure that the rent's being paid, because many patients we receive today the parents have to stop working. They ended up with an eviction letter and some of them become homeless because they cannot afford. So the foundation today we raise funds to make sure that we provide the financial assistance to the patients. We have partnered with 240 social workers throughout the country, 140 hospitals, that when they identify a patient or family who are about to receive a transplant, a patient or family who are about to receive a transplant but are faced with some financial barriers, out-of-pocket expenses that are not covered by insurance, they apply and reach out to us for us to provide that support so that there is no barrier to transplant, so they can continue and schedule that transplant date.

Jamie27:00

Yeah, that's great Because I mean, there's so much to think of around the entire situation. So a lot of times you start off with like the medical model of looking at a disease so there's something wrong, let's fix it. But then one sort of ring around that is financial, and you said you know your family had to sell everything, move um, and and you're? You're talking about people that might not have the money to pay rent. They don't have the money to stop working, um. And in another conversation you said that um, I believe you said the number one reason for people declaring bankruptcy is cancer yeah, yeah, medical treatment.

Airam27:43

There are some conditions that someone, such as cancer. It's one of them that get diagnosed with cancer that you know the expenses are so high they're not able to work and ended up filing bankruptcy. Not only that, a number of patients, do you know, ended up not receiving the treatment because they could not afford. Or they do not take the medications because they could not afford, or they do not take the medications that they have needed and required for treatment because they cannot afford. So the financial stress of patients facing cancer is tremendous.

Carlos28:15

You were kind of hitting on some of this, but can you perhaps maybe frame up like it began with you know, your sister, one patient, one case, and maybe a look at the numbers of where it's grown to you know, today, now the organization is in so many locations you know so many parts around the world, has helped, how many patients has raised that Maybe you can give us a good sense of that for us.

Airam28:47

Yeah. So the first years of the foundation, our main goal was to recruit donors right, especially diverse donors, and through that work we were able to provide recruit donors that donated to 1,000 patients. So 1,000 patients received a bone marrow transplant from donors that we have recruited. Once we start providing financial assistance to patients last year was the first year of our program that we call ECLA Cares we provide financial assistance up to $1,000 to 240 families this year. Last week we surpassed 710 families and patients that received this $1,000, up to $1,000 in financial assistance and those patients there are some criteria. One of the criteria is that they have to be 400% of the national poverty level, so there's a low socioeconomic status who really struggle to be able to receive the treatment because they cannot afford the everyday expenses in the parking transportation. But we received over 1,400 applications and that number continues to grow.

30:03

One thing that is important is that our organization is focused on patients who are receiving a bone marrow transplant, regardless of their diagnosis.

30:14

As you probably know a lot of foundations they provide support for patients that are disease-specific Leukemia and Informed Society is an example. They are specific disease that needs to qualify for them to receive support. In many other organizations, we felt that we need to find where is the gap. We do not want to replicate the word of all those wonderful organizations out there. And when we said regardless of diagnosis, we found that patients, for example, with sickle cell, there's not much where they can turn to for financial assistance. So we are one of the few organizations that are providing this financial assistance for patients receiving a bone marrow transplant that cannot turn someplace else. So we are experiencing a huge growth, as I shared with you, from 240 to over 700 patients, and next year it will be a much higher number. But of course, fundraising doesn't grow as much as they need. So the need is great and that's why we need to continue to request support from everyone so we can provide the support for those patients.

Jamie31:20

That's cool, yeah, so as a foundation you're able. So some foundations don't, uh, have people donating to them. They have a source of money that is self-sustaining. Your foundation has a little bit of that or none of that, but you do fundraising and you ask for not only you know people like bone marrow donations, but financial donations.

Airam31:47

Yeah, so there are a lot of private foundations or family foundations, that many of them probably you know, the Bill Gates and the Alinda Foundation comes from wealthy families not the case of my family. So we are a community-based foundation. We rely on donations from individuals mostly, but also from corporations and other foundations that we apply for grants to raise funds so that we can support those patients and families.

Jamie32:16

So then, another area I wanted to explore the financial aspect of it is so important, but also the sort of financial aspect of it is so important, but also like the sort of emotional part of it, and you know, in another conversation that we had, you said that you do find yourself providing some of that. You know emotional resilience and even grief, support and things like that, and a lot of times that goes overlooked as well, right, so like everyone's always focused on the medical model, so much that the financial piece of it and then the emotional piece of it sometimes doesn't get acknowledged, but you're also providing that. Can you tell us a bit more about that?

Airam32:58

Definitely we. Also, although we are a very small organization we are Stafford three. Now we have this personal contact with every patient that reach out to us. I personally, being a patient family, I know what it means to feel. When we came to this country. You didn't speak the language, you did not know anyone, and it was very lonely. When I came home from school and my parents were not there, you know, for lunch, you know for anything, my brother and I, you know, had to figure it out. So we know that cancer can be very lonely. So as we talk to families and we interview them when we provide this support, some of them saying that, yes, the financial support is amazing, but just know that someone care for them. It means a lot for them. Many times they don't know what to do, who to talk to, and many families reach out to us.

33:52

A single mom of twins that both need a bone marrow transplant was in despair, had no idea what to do. They received a transplant and they relapsed. They need a second transplant. She had already decided that she's not going to move forward, she's not going to do a second transplant, because she could not deal with this again. It was not until she learned about us.

34:14

We provide financial assistance for her, rent, for transportation, but we kept in touch with her and encouraging her that you know everything's going to be okay, that she'll find the resources, that her kids were going to receive the transplant and do fine and they are doing amazing and she decided to go on. Sometimes she calls just because she had bad news and she did not know anyone to share those news, even though she had family and friends, was not someone that went through this, that understands what's going on. So it's more about not only myself, but myself and our team members that are always there to lend a ear, for them to share with us what their thoughts and concerns are. We also are always looking for other resources for them to expand what we do, always looking for other resources now for them to expand what we do.

Jamie35:16

Yeah, so then do you stay in touch with the families?

Airam35:17

then also, as they go through the process and continue on?

35:19

Yes, definitely, and we know how important it is for someone who's starting that treatment to receive a bone marrow transplant to hear from others.

35:27

So we do host luncheons in many different parts of the country called now many times called Mix and Match for patients. So we invite patients who have received the treatment and they are finding a cure, maybe five, 10 years now. We invite current patients who are receiving treatment and those who are starting the treatment to receive a bone marrow transplant and we ask them to share their story. It's a patient luncheon that we connect them so they provide more of a support for each other and they see that they're not alone. They can see that others went through this.

35:59

They also have financial challenges and difficulties. They have fear, as they have, and they get to connect and get to know each other because we know exactly how lonely it was back then and we always reflect back and you know, as a young, 12 years old, 13 years old, but even for adults, and we have seen the response from that and make sure in connecting people because we are very small, but if we connect everyone and form a community of people receiving bone marrow transplant. We can definitely empower those patients to go through such a difficult challenge in their lives.

Carlos36:35

So if you were to look at kind of the next chapter of the organization, the foundation, can you maybe lay out that vision?

Airam36:46

Yes, I mean we know the need is great. Of course, the expenses of patients going through a treatment is huge. So we definitely need to pursue, raise more funds, create more partnerships and, as we continue to hear that, you know bone marrow transplant continues to increase, the more and more disease are treatable through bone marrow transplant, we need to continue to provide that support. So when we have not reached all the hospitals or social workers or places where we can connect with patients, so that number continues to increase.

37:25

For you to have an idea, there are about 20,000 bone marrow transplants per year in the US and there's a long way to go. So we provide $1,000, not to minimize what we do. But someone who needs help with rent, especially with places like New York City, chicago, California, it helps. It helps them avoid that eviction, but the expenses are so much greater. Or when they need to relocate, someone who lives upstate New York needs to come down to New York City for treatment with the family. So the financial need is much greater than we can actually provide at the moment. So our vision is that we are going to be side-by-side with the patients, raise as much funds as possible, provide as much logistical, emotional and financial support as we can.

Jamie38:18

Yeah, so are there? I'm sure you have like, your frustrations with, like, our healthcare system, right, and you probably have an opinion about the fact that a foundation like yours is even necessary like, from the financial standpoint, any kind of roadblocks or anything that you would just sort of add to, I guess, probably what we already know about the healthcare system.

Airam38:45

Yeah, I mean I think that it's great that an insurance is paying millions of dollars over treatment, but sometimes it's being able to hire a caregiver that the insurance does not cover, that a transplant is being postponed, and when we come in and say you can hire a caregiver, which is required 24-hour caregiver for the patient to receive that transplant. So it's difficult to understand and know how that works. And now, of course, I'm not an expert on how insurance could. Some insurance are starting to provide more assistance than out-of-pocket expenses but it's something that it needs to be looked upon, especially from the human level. You know cancer affects the entire family, not only that individual. It's not only the treatment you know there are so many other things that are affected but definitely something that needs to be looked at. Only the treatment you know there are so many other things that are affected. So, but definitely something that needs to be looked at and you know, and it's as you, as you mentioned, it's it's complex, so to be able to provide all the support that is needed.

Jamie39:50

Yep, and you know you, you mentioned that a person would need to be at a certain like poverty level, right, and so I think that brings up the notion, you know, that things are not really equal and there's, you know, disproportion. So it's great that you're helping that group of people, and I think we see statistics that certain groups of people get affected more by disease or by trying to get the treatment to that disease. So is there anything more you could add? You could add to that piece of the puzzle.

Airam40:23

Yeah, although our application is open to everyone that meets that criteria of 400% of the public level, we see that 60% to 70% of our patients are from ethnic diverse background, mostly Hispanic, african-american, asian and, like sickle cell affects, mostly african-american. And many times now the treatment is there, the donor is there like that's what my sister did not have but the financials are not there. Um the out-of-pocket expenses, and that's what we're trying to do to provide equal access for all um especially for those communities that you know they it's. It's it's because of who they are that is affecting. They might even lose their lives.

Carlos41:07

Is there a partnership that you're doing with another organization, kind of going to the needed families together?

Airam41:17

Yeah, so we have identified all the organizations that provide all the kind of support, all supports that we provide as well, because, like I said, sometimes the $1,000 is not enough, so we always refer them to others and they get some from us Although ours is at a higher level than many other organizations in terms of their dollar per patient but when we add the different organizations, they do get all the support or a good portion of the support that is needed. So we're always looking to share the need with other organizations and to provide the best resources for the patient.

Jamie41:57

Yeah, so is there anything that you would say to you know a parent whose child is going through this, or just to anyone that is going through it, or knows someone that's going through this type of you? Know the way they need bone marrow?

Airam42:14

Yes, the main thing is, like you know I remember my father always mentioned that you know, the first step is to get her treatment and cure her, no matter how much it was going to cost. And then we worry about how it's going to cost my brother and myself. We pay for the rest of our lives that treatment. I think there is hope and there is support out there. I think there is hope and there is support out there and I think that many families need to advocate for themselves and ask, you know, ask questions, ask for resources, because I know those who really look for it and go out there. You know they are able to identify.

43:03

You know, sometimes, although it's very difficult, you know, going through a cancer treatment, seeing the ones suffering the time that they have to take off out from work, you know sometimes they don't feel there is much hope out there. But I see that, as the families really advocate for their loved ones or for themselves, you know they do find a way. They are good people out there, they are good organizations out there and the most important thing is that you know is to keep hope, faith that things will go well, that they'll do their best, and you know not to although it's difficult to say that not to give up. You know that there are a lot of people that are out there to be able to support and, you know, for those who have faith, know that god watching over us will definitely, you know, get them to to a better place yeah, I think it's just you know one thing that that comes out of.

Jamie43:50

What's wonderful about this is you know your sister's life, what she wanted, that note that you know from that so much was born and so many lives were affected and improved. You know so I think that's that's really powerful. So you, your family, must feel, you know, pretty proud about that.

Carlos44:11

Yeah, it's also incredible to see how far a parent will go to, you know, save their child's life, and so much so that it's created this foundation, kind of this, you know, which you're leading today.

Airam44:30

Yes, and now that I am also a dad of two, you know I understand more what a father would do. I understand more what a father would do and I understand that even for joining the registry, it's not joining the registry for another person. It can be for us and for our kids as well. So I do encourage those who have not joined the registry yet or not supporting those organizations. You know, if I ever need a bone marrow transplant, I'm much more confident now, with a registry of over $32 million worldwide, that all the registries are connected. I have a much better chance.

45:10

So, but there's still patients who cannot find a match right and it's providing support to the organization and many other organizations that you know we have to always think about others because it can affect us. We never thought that we have to leave that beautiful beach in Brazil with our family and friends, you know, to be able to deal with this. So definitely a lesson learned, and I know that you know even today. You know I was much younger. Learn, and I know that you know even today. You know I was much younger. But 32 years later, I see that my sister's watching over us and I know she's very proud to see. You know every family that. You know all the cards that I get here. We thank you for that support that allowed me to receive my transplant and many patients celebrating that they are healthy and alive.

45:57

Today, many patients celebrating that they are healthy and alive today, so it's very encouraging and I think that you know there's nothing else that I would like to be doing than this work today.

Jamie46:13

That's great, Airam, thank you very much for joining us. It was really enlightening and very touching to hear the story and the history and just it's so impressive and very touching to hear the story and the history and just it's so impressive everything your organization is doing, from the financial support to the emotional support, the community support, and that's growing and growing and it's just really impressive. And I want to thank you for speaking with us today.

Airam46:34

No, I thank you both, because the only way we are able to do this today is because of the support of individuals like you, who are sharing their story and encourage people not only to support the organization but become bone marrow donors as well, and the support of all the community and all the patients who are sharing their story, so that we all can come together for the benefit of one.

Jamie46:57

And what is the website that people can go to?

Airam47:01

It's www.icla.org, so icla.org. Great, okay, well, thanks again, and any support, no matter what size of donation, it will make a big difference. Just imagine it can be a lunch for a parent who is in the hospital with $10 a month. We have monthly donations, or it can be $10 million each in the backs of any family. So thank you.

Jamie47:34

Yeah, Okay, Thanks everybody for joining us today.

Airam47:37

Thank you.

Jamie47:38

See you next time.