Career Cheat Code
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Career Cheat Code
055 | Transforming Loss into Hope feat. Airam da Silva
When life's most arduous trials become the fuel for an unwavering mission, it's a story that demands to be heard. Airam da Silva, the driving force behind the ICLA da Silva Foundation, joins us to share the profound narrative of turning personal loss into a beacon of hope, as the foundation works tirelessly to match bone marrow donors with those in dire need. The episode opens with Airam's emotional recount of her sister's battle with chronic myelogenous leukemia, the family's move from Brazil to New York in search of a cure, and the inception of a foundation that has since grown into a stalwart ally for patients and their families.
The struggle against life-threatening diseases is a journey that reshapes destinies. We uncover the tale of a young boy, propelled by his sister's plight, whose dream to become a doctor and combat leukemia epitomizes the profound transformation that hardship can engender. This segment illuminates the community's rallying efforts, the bone marrow drives, and the deep commitment that extends beyond personal tragedy, showcasing the power of collective support and shared purpose in the fight against blood cancers.
Wrapping up this incredibly touching episode, we explore the ICLA da Silva Foundation's expansive impact and the strides made in the medical community to ensure bone marrow transplants are within reach for more patients. You'll hear about the evolving strategies in donor matching that are breaking barriers for diverse ethnic groups and the financial intricacies of running such a consequential nonprofit organization. From the individual growth of those involved to the countless lives transformed by the foundation's work, this episode is an ode to the human spirit's capacity for hope and healing.
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Host - Radhy Miranda
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Producer - Gary Batista
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I can tell you it's a special case because I went from the beginning where the family was struggling, even though after we found a match they were a dish of struggle. But once that patient went on stage and thanked that donor for saving his life, it's not only at that moment but at every event that happens I can say it could have been my sister who was thanking that donor for saving her life.
Speaker 2:Welcome to Career Tree Code. In this podcast, you'll hear how everyday people impact the world through their careers. Learn about their journey, career hacks and obstacles along the way. Whether you're already having the impact you want or are searching for it, this is the podcast for you, so Irem welcome to the show. Thank you for having me. Really appreciate you taking the time to connect, and all running an organization can pull you in many different directions, so really appreciative of you taking the time to do this today. Let's dive right in, though. Let's tell the world what it is you do for a living.
Speaker 1:I saved lives of patients whose only cure is a bone marrow transplant. And we do so by providing financial, logistical and financial support for those patients whose only cure would be that treatment of receiving a bone marrow transplant. And it always started after my sister went through the process of trying to find a match and now my family came to this country trying to save her life. So today, through our experience and our motivation to help others, we provide the services so that others now can go through treatment and hopefully receive the cure.
Speaker 2:Yeah, and I'm very familiar with this story, but can you tell me what is your role and what is the name of your organization?
Speaker 1:I'm currently the president and executive director of the ICLA, the Civil Foundation which was named after my sister. Icla Got it.
Speaker 2:So that sounds like there's a story there. Let's start there. Let's start with why does this foundation exist today?
Speaker 1:Back in 1989, when we were living a very comfortable life in a beautiful beach in Brazil, my sister was taking dance classes and after one of those classes she started having pains in her legs and arms and after running to the hospital in the middle of the night when we woke up, when she was screaming pain, she was diagnosed with chronic myelogenous leukemia and the doctor said at the time that the only cure would be a bone marrow transplant. So she was 11 years old and within three weeks of her diagnosis my family decided to sell everything that we had in Brazil. My father was a very well known chemist in the sugar and alcohol factory, but we had to sell everything that we had and came to New York to Memorial Sloan-Cathrine Cancer Center, because at the time, in 1986, here in the United States, they started the now national marrow donor program. That now it's been a match and MDB and our hope was to find a match, since my brother and I was not a match to my sister. So we are, after being tested in Brazil and finding out that there was no match, her only cure would be a bone marrow transplant. Memorial was one of the leading hospitals doing bone marrow transplants at the time. So we came here with the hopes of finding her a match and give her the best treatment we could find in the world.
Speaker 1:But unfortunately, when we arrived here, the doctors searched the national registry.
Speaker 1:There was no match as well, and we came to learn that now a person is more likely to match another person from the same racial-ethnic background, and that's when it was suggested that we start a campaign within the Brazilian community in the United States.
Speaker 1:We did not know how many Brazilians were here, but my family went to the Brazilian consulate and talked to them and learned more, and we were invited to start going, working together with the New York Blood Center, to go to Newark, new Jersey, where there is a very large Brazilian population, and then churches, organizations, start opening doors for us to do bone marrow playlets and bone marrow drives as well. And again, it was just at the beginning of the national registry. So there was a lot of known things that were not in place yet that we had to work to put in place. But to make a long story short, after two years of running bone marrow drives, some of the patients that were also looking for a match in the registry found a match from the donors that we were recruiting, but unfortunately my sister was never able to find a match and she passed away at the age of 13 without finding that person who could give her her healthy life back.
Speaker 2:Yeah, I'm sorry to hear that. I know you and I have spoken about this for a long time, but it's one thing to acknowledge this in this type of forum. How old were you?
Speaker 1:at this time, yeah, so when I arrived here I was 13. And when she passed away, I was 15 years old.
Speaker 2:Got it Okay. So at this time, you are now fully settled in New York City. Your dad is no longer a chemist, I'm assuming, or what were your parents doing at that time? How were you all settling into the states, aside from all the things that you were dealing with through health?
Speaker 1:Yeah, definitely. As you know, the treatment is very expensive. So because now the amount that we raised in Brazil with the exchange rate, this money started running out after one year that we were here. So my dad had to start working as a taxi driver. I was attending school on Roosevelt Island.
Speaker 1:It's a small island, so I went and went to work delivering Chinese food at the time to make sure that we have food on the table. We were able to pay the bills and then at that time we were trying to make sure my sister had everything that she needed for her treatment. But after she passed away we actually went back to Brazil because she always wanted to go back and not ship us the way. We wanted to bring her brother to rest there. But my dad had the apartment to close here and also there was a very large bill in the hospital that he had to make sure that it gets paid. So when he got here he met so many other families also asking for help to find a bone marrow match and that's when he decided to continue the work that he was doing recruiting bone marrow donors and he came back.
Speaker 1:Actually not until a year and a half later when my mother came to work at the Brazilian Consulate and I continued with my school. I was free now. At the time I was in high school and now I'm in international high school. I went first to Libertad School, ended Humanities High School to continue my education. Why were you trying to settle our lives in the US?
Speaker 2:So this is unfortunately not an uncommon story where the family has to either uproot or completely turn everything around for the sake of trying to save one of their family members' lives, and sometimes it's successful, sometimes it's not, but as dedicated parents and family members, you do what you can right and you do as much as you can. So your family uprooted from, as you mentioned, well-established jobs and careers there to then coming here and trying to find odd jobs to make ends meet and try to put that big hospital bill and the expenses of moving and all of the things that come with, as you know, just healthcare right. So there's a lot of other costs associated with that, not just the hospital bill. Right Like you have to get to work from the hospital, you have to sometimes miss work to go and be there, you have to commute, you have to eat, you have to take care of the other children that are involved.
Speaker 2:Right Like yourself, and you were yourself trying to find another job at 15 of that age. So it's certainly a lot. I typically ask people if what they do now is what they always wanted to do for a living. I'm going to imagine the answer for you is no, but we'd love to hear if there was another career you had in mind at the time or if you feel like, kind of, the universe just played its part in leading into this place here.
Speaker 1:Yeah, you know, when I came here, as I mentioned, I was 13 and because we lived a very comfortable life in Brazil, for some reason maybe my memory I don't have recollection of thinking about what I want to do in life other than be with my friends, play in the beach you know it was a beautiful beach that I used to live and go to school, play sports, and I really don't remember.
Speaker 1:To be sincere, however, through my sister's treatment and the days and nights and weekends that I spent here in the hospital and seeing what she was going through, and through the experience that I had, you know, into the community to create awareness and education about bone marrow transplants, now that's when the idea of becoming a doctor came about. You know, it's many times known because of a personal experience and we see we admire the profession. So that's when I would say probably when I was finishing, when I was in high school that's when I started thinking about more now biology and chemistry, and I'm going to the medical school to find a cure for cancer or the leukemia. So that's the only time I start to think about now becoming a doctor.
Speaker 2:That makes sense. You know, that seems like something that is intuitive, right? If you see your sister go through something or like, okay, well, how do I become part of the solution? How do I help that? So tell me about that process. So you're in high school and you're now you know you just lost your sister while still in high school and you have to continue to go to school and you have to continue to figure out what you're going to do. So you're planning for medical college at that time and then ultimately trying to go to medical school. Tell me what happens once you graduate high school?
Speaker 1:While I was in high school I was very involved in organizing blood drives and it turns out that you know, I received the, you know, humanitarian awards for human needs in high school and today I believe even today is one of the high schools that has the largest bond blood drives in New York City.
Speaker 1:So all my semesters there and as I prepared to go to college now I start to take the AP biology, ap, chemistry my school and high school and then I remember talking to my guidance counselor. She was now always saying that it was very difficult for someone who was now my English was still very not as good and now my grades was not the best because of the challenges. I went to human is high school and she mentioned that Now it would be very difficult for me to be accepted at a school that is like an Ivy League or even now a SUNY Binghamton, for example, who was very known for biology and science. But I went against her advice and ended up applying anyway. She was encouraging me just to apply to City colleges or some of the other schools, which are amazing schools as well. But I decided to apply and I actually was accepted at Binghamton College University and as well as Stonebrook, which is a great science school, but that's where I ended up going to Binghamton University, upstate New York.
Speaker 2:Yeah, so Binghamton. I know also about 3 and 1 half four hours outside of the city. Yeah, nice and cold. Yeah, oh for sure. When the weather says it's going to snow for Monday, that's the weather for the rest of the week. So you go out there. And at this point was the Equal of the Silver Foundation formed already.
Speaker 1:Yeah, so the foundation was founded exactly one year after she passed away, so she passed away in 1991. And in 1991, it was already established 501c3, nonprofit organization and my father was pretty much the one involved. I was helping as much as I could the metal drives, carrying the boxes, giving out flyers, inviting people to join now through the high school, organizing some blood drives as well to help. And only the senior class could join the registry because we have to be 18 to join the registry. But I was always very involved in helping as much as I could. But I was of course finishing high school, starting college at the time.
Speaker 2:So tell me why the Equal of the Silver Foundation was founded and what its intended purpose was in 1991?.
Speaker 1:First, even though my sister was only 12 years old, while she was in the hospital and waiting to find that compatible match, she always mentioned that after she was cured she wanted to start a foundation to help those other patients that she found. She met in the hospital and needed to find a matching as well. Now, like I said, she was going on the path train to new work carrying the boxes to ask the community to join the registry. So she had a lot of experience on that participating even though she was only 12 years old at the time. So she always mentioned she wants to start a foundation to help the other kids. Second, she also saw that some of the people that we were recruiting were matching with other patients and those patients are now receiving a bone marrow transplant, saving their lives.
Speaker 1:And lastly, when my father was taking her room apart after she passed away, he found a little note saying mom, I'm doing well, please help my friends. And I don't know why she wrote that, but we imagine that it was what she was always mentioned, that she wants to help other kids. So with that now my father had in knowing all the patients that were asking him to continue their bone marrow drives. That's when the foundation started. So they decided to start a foundation and continue to work together with the New York Blood Center and the National Marital Dental Program to create awareness education, specifically on the ethnic diverse communities, because they were underrepresented in the registry and so the main goal and mission was to create awareness education and add more ethnic diverse donors to the National Bone Marital Registry, which makes sense right, while you were hosting blood drives and bone marrow drives through high school, and then did you also do that through college.
Speaker 1:Yeah. So throughout my four years of college, every semester I was working with a school newspaper to write articles to create awareness. People know what bone marrow edge would take away the fear, but also bone marrow drive. And many times during the week when I did not have class, I was not playing sports, not hanging out with friends, but I was traveling up to New York to Sunni Albany and Cornell University to also host bone marrow drives, because I knew that now every single person that joined the registry was a hope for a patient like my sister who never found a match. So when, on weekends, I was always planning the next one and planning, making calls and reaching out towards student groups, other college universities to continue to add as many donors as possible.
Speaker 2:OK, that makes sense. So, and even through this, right in your mind, you're just doing this as something that is just part of your continuing your sister's legacy and doing this and trying to support others, but you're still going to school to try to be a doctor right.
Speaker 1:Yes, that was the goal. I was a biology major, economics mining, Sonny Binghamton, and I just know that my motivation was no longer my sister, of course, but I knew that I could not lose that fight. Now my enemy was the leukemia who took my sister's life away and, of course, I was still very young. I don't know where to head in mind, but I thought that if I continue to do what I was doing, all the kids, or even adults, like my sister was a child now not have to lose their life because there was not a donor. So I continue to do that through college and why I had to make sure I had good grades to go to medical school and make sure I had Binghamton University as a very competitive school as well, not as diverse in the past. So when I first went there and there was a challenge in terms of adapting to the environment, to the school itself, but now I did my best.
Speaker 2:Okay, that makes sense. So tell me what happens upon graduation. What did you think was going to happen and what actually happened?
Speaker 1:I start to realize now maybe every was becoming a little bit more mature that you know what. What really took my sister's life from us was not because there was not good doctors there were. We came looking for best doctors in the world in the bone marrow transplant, but it was because there was not enough people in the registry willing to donate bone marrow people who are from our Communities now, especially from the ethnic diverse communities. We know that even for blood donation is not a common thing that many of our people in our community do. But I thought that Just by creating that awareness, education and inviting people to join the registry, I could be saving lives. And I saw year after year that the more donors we added to the registry, more patients were finding a match and receiving that transplant that my sister never had a chance to. So that's when I thought now well, I don't. I don't think we need another doctor there who will be struggling to treat the patients Because there's not a donor.
Speaker 1:So that's when I thought now I would like to continue this work of working within the community, building relationships, bring your organization's college, university students, young people On this movement to create awareness there that we all have the power to save a life. I simply sympathize Learning more about bone marrow and joining the registry, and that's where I decided to. Instead of going to medical school, I went to New York Medical College and to get a masters in public health so that I could continue working, you know, in the community creating awareness and education. Actually, my thesis for my master's degree Was know about the need for diversity in the bone marrow registry. I was sharing how a registered that was growing had more than a few million donors already but not enough African-American, hispanic, asian donors in the registry, and those community was the one they weren't really struggling to To receive a bone marrow transplant. So I thought that by dedicating the time, I would be giving no equal access now, at same opportunity, to all the communities that we could.
Speaker 2:Well, so when you went to get that masters, were you already working? Did you already start for the full-time working at the foundation, or were you? Did you go straight to time masters?
Speaker 1:Not yet. Now what I had to do was although I had student loans from being done already, because my parents, my father, although he was working the foundation for the first seven years, he did not take any salary now because the foundation is very small. So I had to go back and I had to work. So luckily I was able to get a job at the Brazilian American Chamber of Commerce. They organize a major event you know it's a person of the year awards and I start work with a founder, especially during summertime. And and then I used to commute to New York Medical College right after work. I went to school graduate school at night to be able to get my degree and by working there I was able to Not only pay the my graduate school but also start paying my student loans from being a university. So throughout the two years of my graduate studies, you know, I was working full-time the Chamber of Commerce to be able to know Not only from my personal expenses but also to be able to pay for my my education.
Speaker 2:That makes sense. So tell me about what masters degree did you get, and do you feel like it actually helped you in the way that you thought it would?
Speaker 1:There was a masters degree in public health with a emphasis on health care management and policy. It helped on learning a lot more about, now, health management. But the work that we do is its community, is Partnership and building relationships. I do know that a lot of the things that I learned in terms of, you know, healthcare, finance and policy, I mean it does help understand. You know, of course, I have worked throughout the years and tried to Develop the policies to cover the cost of a born Maradona and the off and many other areas. But I think that every now education that we we have always helped in the process. But the work that we did was a lot, you know, working directly with the community. We didn't know the public to invite them to become born Maradona's.
Speaker 2:That makes sense. Okay, so you finish your masters degree. Now you have all this new knowledge and understanding of how to Apply those skills. At what point do you start thinking about kind of what is next at the Chamber of Commerce, what is next for you professionally, how can you actually dive into this head-on and and work on this cause?
Speaker 1:Yeah. So Even when I was in my last year of graduate school working in the Chamber of Commerce Although I was working there I was always now doing work, trying to schedule born Maradona's, helping my dad at the foundation as much as I could, and then we saw the Opportunity to really expand the work we're doing at the foundation. That's when my my father said why don't you come join me at a Foundation so that we could, you know, work together to do more drives, bring more donors? I did accept that invitation. However, I had to really it was Sacrifice the salary that I was receiving in the Chamber of Commerce. Of course it was more like significant salary at a foundation, but my passion was really there and that's when I joined him.
Speaker 1:We start working more with our board of directors. I start we had our first gala. It was actually up to anniversary gala at the time. It was at the Plaza Hotel and we really wanted to focus a lot on fundraising. We start to build relationships with college universities and recruit men. You start taking off At a different level when we were bringing out volunteers and the activists continue to expand Until we got to a point that we needed more help.
Speaker 2:Yeah. So how are you all operating at that point where you all applying for, for grants and getting support through that way, where you Just straight fundraising through things like the gala, like how are you Try? Like, at some point bills do have to get paid, right, so how we're all Still able to make ends meet during that time?
Speaker 1:Yeah, so, definitely so.
Speaker 1:They the National Maradona program at that time found Value of what we are doing and we organizing more activities than the New York blood center at the time and we will rely on a lot of New York blood center staff now to be able to support of the activities. And they felt that we could become independent To be able to run the organization without relying on the New York blood center staff. So that's where we ended up having Fee for service agreement with the National Maradona program where now we start to receive funding for the activities that we all Organizing to bring more donors. So it was a fee for service based on the number of donors that we are recruiting. So with that we increase activity. We start to receive Additional funding as well and that's what allows now at the time for my father to Start having a salary, for me to join the organization and have a salary as well, and we start to organize more activities and bringing value you know, more donors to the registry, and that Continued to expand throughout the years that makes sense.
Speaker 2:So, if I understand this correctly, you know the National Registry has an incentive to Diversify the registry because then more people would actually be able to utilize it right? So they have partnerships with organizations like your soul, like the Eclipse of a foundation, and like others to help recruit different pockets of population to have a larger registry right, because, as you said, it is easier to match when you have similar ethnic Backgrounds. So, beat, by partnering with you all and by provide providing you all with funding to provide that service, it in turn helps them, the registry ecosystem Continue to grow.
Speaker 1:Correct, correct and now that was our main focus in our working with a Hispanic, latino and African-American and Brazilian community. Those are donors. That was not where we presented in the registry at the time Got it.
Speaker 2:Okay, tell me about the point early on that you felt not just the impact that the organization was having, but a Growth point, that you felt like you know what this could actually be, even bigger than I then myself or my father imagined.
Speaker 1:Yeah, we did tears that he starts to develop. We saw that you know a lot more churches at the time Because at the time we used to recruit donors between 18 and 60 years old. Now college, university student groups got more and more involved. We became no, a group that was bringing one of the largest number of donors in the country. You know, even though we start as a very small organization no, my family trying to save my sister but we start to bring the largest number of donors in the country then and that's where we start to need more help.
Speaker 1:And I saw that you know You're not only sharing my my personal story, my sister story, with the community and so they understand what we do, but also the passion that we have in working with the patients at the time and others who were joining the registry. And the more as the year went by, we started getting more involved because at one point we were not only recruiting donors but then we started calling the donors as well. We started a new partnership with the National Registry that when a donor was identified as a potential match, now we also took the responsibility of contacting the donor, letting them know that they came out as a potential match to a patient and now we started with the process of getting additional testing so they could move forward for donation. So the organization continued to grow. What year?
Speaker 2:is this.
Speaker 1:This was probably 2004, 2005. And that's when the time that my family, my parents, were really in a struggle with no family relationships and my mom decided to go back to Brazil and my parents decided now separating and then my dad started a new family. That's when he decided to remove himself from the organization and I continue and that's when I needed the support from the board and support from additional staff and I started working with a number of volunteers and I was able to bring someone, luciana Rodriguez, who joined us and started doing filing and then born male drives and then contact. She was the one responsible for contacting the donors. So we continued to grow within the organization until 2020.
Speaker 1:So, moving forward, at one point we were bringing about 45,000 donors per year and then we continued to expand.
Speaker 1:We were not only recruiting in New York and New Jersey, but now we're recruiting in Boston, in Puerto Rico, because there was a little boy there that needed help finding a match and the family was not finding an organization. So we start working with them, we organize a lot of male drives there and start to expand toward the, especially the very diverse cities such as Chicago, texas and California, and continue to bring more diversity to the registry as well, providing the support of contact donors, so that now we are using not only the culture but also the language to make sure that those individuals were comfortable in moving forward with the donation In a way, like your organization, has absolutely impacted the lives of thousands of people, right, when you talk about recruiting 45,000 a year at some point, right, that's 45,000 potential, potential receivers of the boomerang that we're not at all accounted for, especially with the populations that you're talking about, right, like a lot of diverse underserved populations that normally would not be registered.
Speaker 2:I know you have impacted so many people's lives. Can you tell me the story of one or two that stick out for you, that really hit home, that you're like, okay, this is, or maybe an early one, that you felt like you know what. This is why we're doing this?
Speaker 1:Yeah, it's not definitely wrong. There are so many because, as you know, now every year we used to bring a patient and a donor to meet for the first time. But I mean, there was a case of a little boy actually he's from here at Texas who needed a bone marrow transplant and could not find a match. So we work with a family, even being long distance, when we were in New York, and explain to them about the need of bringing the community together to recruit more donors, and after working with him for about a year or a year and a half, he was able to find a match. But there was another problem which was, you know, the insurance did not cover the cost of transplant. And that's where we said, well, we have to work with our network to make sure that this child now, because the transplant cost them half a million or more. So we, with our support and work with the family. You know we were able to. The family was able to connect with different doctors and a clinical trial was found that could receive a transplant through a clinical trial and then he actually received the transplant. And most importantly is that you know just the fight that this family had. I could see what my family went through, even though they did not have to leave the country. You know, just knowing that, everything that I know my family struggle now the language, understanding the starting, the drives and going to the hospital and getting all the information it was we now were able to provide that. You know, I spent even today now hours on the phone now talking to patients as they have so many questions. Now we know that many times we go to the hospital and you know it is limited time with the physicians, so the nurses, so that's something that we do now.
Speaker 1:So this patient was able to receive the transplant, you know, a few years later. Usually they have to wait one year so they can meet the recipient. And we actually organized this event in New York where one of our dollars, where we were able to bring the patient, the donor, to meet for the first time. And I can tell you now it's a special case because I went from the beginning what the family was struggling, even though after we found a match, they were a dish of struggle. But you know, once that patient went on stage and thanked that donor for saving his life, it's not only at that moment but at every event that happens, I can say it could have been my sister, who was thanking that donor now for saving her life.
Speaker 1:So we knew that. You know, whatever we were doing, some way somehow my sister is present. You know it's because of her what she went through or because her desire to help others that inspire especially me, you know, to do that. And then, now that I'm doing, I see that it is a process, it's something that is working, that it's happening and lives are being saved.
Speaker 1:And you know, no matter where she is, no matter what belief we have, you know, I believe that she's watching over us and she's proud of the work that she came to this world and we had a mission and I believe that the mission is here and the mission is to equal the silver foundation and that's the support that we are providing. So in that specific case, it's now it starts from scratch, from diagnosis to the struggle that my family went through. But also there was closure, where the patient was able to receive a transplant, was able to meet the patient, and he was still in contact today, still attending our events, and it's just an amazing story that I continue to share and stay in contact with him, you know, to be able to be alive.
Speaker 2:Absolutely, and, as you said right, that's one of many of these stories that you have. People of all ages that need this, and you all were there for many years doing this. So can you? I know, you and I know, but can you tell the world how you and I met?
Speaker 1:Yes, so we were doing Bonemare drives and I know that of course we expanded and we had some staff and employees working. And now I know you met one of our staff in New Jersey and then, as you're going through, you know your own story, that you know in your share that you also wanted to. I believe in the time that your son was, I think he was already getting ready to meet the donors. That correct, correct. I don't have a good recollection of that right now, but I believe he was getting ready to meet the donor. It's just very special.
Speaker 2:Absolutely yeah, so I'll share for those that don't know. But my sister was born with sickle-cell anemia, which is a blood disorder that ended up taking her life at age 27. At the time, she had a seven-year-old boy, who has since become my child since she was sent to the moment she passed away. About a year and a half after her death, I was having conversations with the same medical team that treated my sister all her life the same team that treated my now kid all of his life at that point. So I know that they have all the well-intentioned are very much part of my family at this point and they were telling us my family about a potential cure by going through a bone marrow transplant that would effectively take away his sickle-cell disease. And after you go through losing someone at 27, you start thinking about well, what does that mean for my kid now and his life expectancy? So you start thinking about that and, similar to your family story, my family was in Dominican Republic. The only reason why we're in America is because my sister needed better healthcare, which was good and lasted for about 20-some odd years. So after going through that process a bunch of months of meetings, of just thinking about this. This makes sense. We decided let's do it. Honestly, the only reason why we decided to formally do it was because the date that they said the transplant would happen on was on the same date that my sister passed away. So I believe in the universe and I'm like there's no way that this is a coincidence of all the other 365 days. So let's just go with it and let's see what happens.
Speaker 2:Fast forward, years later, he's super healthy, transplanting great. He's great. But during that process I got really interested in the stats around how much of an anomaly his case was. That he was matched really quickly because he's a Dominican kid from both of his parents. Like the odds of that were not as normal and I got really intrigued by that. I was like wait, why? So I started hosting bullmild drives at Columbia University, where I was working at the time, and just a couple of other pop-up ones.
Speaker 2:Then, through speaking with a friend of mine, tim, who had already been a bullmild donor, we and I had this grandiose idea of breaking the bullmild registry record. We were like how are we going to do this? So you and I had been in conversations and we sat with you and we're like this one, we want to do pop-ups everywhere. We did not break that record at all, but the intentions were there and we certainly recruited folks and a couple of which have actually been called back since that have matched. So we have done really good things, just not the initial goal of breaking that record.
Speaker 2:I say that because I think it's important to recognize the synergies between our lives and how paths cross. I started just volunteering and doing things with you and then, after all that, about a year later, you were like, hey, raddy, we should talk about maybe having you on our board and getting more involved. So now it's been four years or so since we've been in that capacity three years or so. So I think it's just amazing to have people like you that have dedicated their careers, their lives, to this impact and have seen it happen in real life and I've seen it.
Speaker 2:And even then, the thing with those bone marrow registries is you can get called years later, like my kid's donor. He said he signed up in college like 20 years ago, and he's like, wait what I'm matched with someone I don't even remember doing this Right. So, like the folks that you have recruited, you may still get calls 20 years from now about lives. So I just wanted to share that because I think it's important for people to understand kind of how the network comes together. We'd love to hear about what Equal of the Civil Foundation is doing now and how you all have pivoted because you no longer focus on the bone marrow registry part. Instead you do some other things.
Speaker 1:Yeah, and I can talk a little bit, if it's okay, about that, because the great thing is that there were so many great people like Raddy that came to us, for example, say I want to break the world record of the number of donors joining the registry. That not only today. The world wide registry, it's a network of all the registry in the world is reaching 35 million donors, individuals who are willing to donate bone marrow. Not only that there has been so many advances in medicine that our patient does not need a 100% match to receive a bone marrow transplant. So a lot of our patients who are African, american, hispanic and Caucasians well, that we were some of them. We were doing bone marrow drives for 10 years. They all received the bone marrow transplant from their parents. And what I say today is that If my sister was here today, she would receive the transplants from my parents, or even myself or my brother, because that match does not need to be 100% anymore. So in the past, for example, an African American had, I think, a 29% chance of finding a match in the registry. Now that percentage is up to 80% and is very compatible to occasion. So because of the advanced medicine and research that has done that in 2001, right after COVID. Now we no longer needed to have a very large network of individuals recruiting bone marrow donors. Not only that, they found that the best donors are those between the ages of 18 and 35. So, as I mentioned in the beginning, we used to recruit donors between 18 and 60. So a lot of our drives were the churches. Now it's only between eight. To join the registry have to be between 18 and 35. So a lot of the activities are college universities. We do no longer have that now. Agreement or partnership with Bidematch. Now where we used to recruit donors and Bidematch not only us there were 19 groups that now it's more targeted campaigns at college universities and many different parts of the country as well.
Speaker 1:But we found something as we were learning about this and the advances in medicine, I said what else is a barrier to patients Now, since most of the patients now finds a match, why some of them, especially from low socioeconomic status or from the ethnic diverse background, are not receiving a transplant or some of the barriers. So we found that financial barriers is very it's one of the things that do not allow patients to receive a transplant. We know that 74% of cancer patients either skip or delay their care because of cost, and 24% of cancer patients file bankruptcy or they lose their home because it's not although many do have insurance that they cover the treatment. But, like we mentioned before, there is the cost of transportation, lodging meals now, even rent, now not everyone leaves close to a transplant center. So in 2021, we review our mission and said how can we remove those barriers for patients from now low socioeconomic status, those that are below the 400% of the poor with the level, who cannot afford a cancer treatment even though they have insurance? So that's what we do today we work with an amazing community of supporters and donors and corporations and foundations that we raise funds, and we have partnered with 280 social workers from throughout the country, 150 hospitals that specialize in bone marrow transplant.
Speaker 1:And when they identify a patient that, for example, if there is a single mother with one child whose child was born with bone marrow failure and needs to go through a bone marrow transplant at the only cure and I'm talking about a patient here, valeria, who she found a match in the registry she's not even one yet, but she has to go through this transplant, so her mom had to stop working to be able to care for her and this period of time between the preparation for the transplant and all the medications and make sure she was ready for the transplant. It took one year so she no longer could pay her rent. So she ended up and she was spending all the time in the hospital. She brought all her loggages, she was pretty much leaving the hospital room, but the doctor said that she could only receive a transplant if she had a safe, clean place back home where she could go back so she could now continue living her healthy life. And that's when the social worker reached out to us and said I have this patient who needs help. We have a bone marrow donor. She's receiving the treatment here. She's also having a lot of expenses with the meals she's eating out here in the hospital every day and then she needs to put a deposit so she has a place to go back, since she lost her apartment already.
Speaker 1:And now the challenge is that when someone's going through this and there's a lot of needs now, what the mom Sherry does is that a lot of friends and family now kind of distance from her and she could not find and she not. Only we provided the financial assistance, but also the logistical and emotional. Our patient coordinator, adriana, she's available. The mom told us that she was calling Adriana every time she was in the hospital by herself and having a difficult time. And she called Adriana. Adriana encouraged her, talked to her. Everything's going to be well, everything's going to be working together. So we provided the funds and she was able to find a place that was clean and safe for the daughter.
Speaker 1:The transplant was scheduled and she received the transplant and she's very close of celebrating two years old and leaving out of the hospital now. So this is one of the cases. So we provide financial assistance for Lodging patients who live upstate New York and coming down to the city for treatment, down the need to stay close to the hospital, or patients who travel long distance with gas tolls, all those expenses when they are no longer Working or even if it's an adult, know one of the husband and wife's are no longer working. But also provide logistical and emotional support and many times it's the utility, sometimes, specially not the, sometimes people are having a hard time paying the electrical bill or the heat, you know. So all the expenses out of pocket, expenses related to know that With the expenses of the treatment. So and we do that within 60 days of the transplant is that one of the criteria to receive support?
Speaker 2:Wow, that is amazing and it's absolutely needed. I'll tell you just from my experience when we went to when the bone marrow transplant Process it was a stem cell transplant process right, we lived in the hospital for 52 days. I'm gonna outline some of the privileges that I had. Right, I was married, so there were two of us that were in the picture. We both were salary employees, so we were able to take family medical leave time and vacations and we had really flexible work environments where people understood what we're going through. All of these things are not things that are given by anyone. Right, our checks were the same through that entire time. Right, so we can miss a month, but through our sick time, vacation time, we were fine financially. We had extended family, so, or our broader family, including our parents, my sister, sister, our friends and like that network that just kind of came together and took shifts and did things right.
Speaker 2:That's not everyone's situation and during that time, not just those 52 days, right, you're thinking about where you're living. You're thinking about commuting. You're thinking about food. The food that the kids eat have to be very clean so you can just order from any restaurant specially for that first. Like year afterwards so not just the 52 days that you're in the hospital is the year after that.
Speaker 2:Once you leave that 52nd day, we have to be back in the hospital five days a week for a couple of weeks, then four days a week, then three days a week, then two ice week, then once a week for an entire year.
Speaker 2:At the time he was in school, yet a missed school for a year and get home school, right. So there are a lot of like layers of Things that have to happen through this entire process. The outcome is beautiful on our case was. It's great and like you know what has to do with that disease. But the process is strange. It like it strains on a lot of things in your family, right. So I appreciate that organization is there that can Alive some of those cars, because just in cabs and food along and food alone, that's a big burden, so and a big barrier for people to even consider having this as an option, and it is a shame that in this country you have to Sometimes make the decision of your kids health and your economic situation right. So I appreciate organizations like you that are like stepping up and fill that up.
Speaker 1:No, thank you, and it's important to remember that a lot of those patients they are ready receiving chemo treatment for one or two years until they are ready for a bone marrow transplant. That's very intense. So by the time they get there now, a lot of the reserves has been exhausted. All the expenses has been increased when the income has decreased. You know. That's why we are here and we see and we are definitely Now the number of cards that are distinct, your cards, and that's just that I received here, amazing, very encouraging, not only that some of them share it was not that a thousand dollars that you help me, my logic, but just know that you guys care in the community that supports this organization.
Speaker 1:That's what it meant the world to us, because we have already exhausted our family and friends and our organization, who does not even know me, comes and help me. Make sure that I Add that eviction letter that I received. I send it back without payment and I'm not going to be evicted and I will have a place to stay after my transplant. That's very powerful and we really Trying to listen to the patients. I personally I'm on the phone with the patient all the time they call. We receive an application. It's missing a document, we don't decline and send it back. We call them because we know what they are going through now. The last thing that they had thinking a hospital in the under receiving came in or is that. Where is that bill? That he bill, that I have need help paying, that is delay already two or three months, that the same day when I cut my electric bill and I'm not going to have heat when I come back home. So we really try to work and provide that now, not only financial, which is critical, but also the logistical support that we provide to them so that we know holding their hands as much as we Can.
Speaker 1:But this is only possible because you know all the generous donors and individuals that are helping us. On a monthly donors sometimes is ten dollars a month, which makes a big difference. Just know that those patients do they need to eat lunch or they can't give a needs to eat lunch at the hospital, breakfast, lunch and dinner. So at ten dollars you'll be covering a lunch, you're going to be covering and dinner and it's about no community right If you have no a thousand. You know people donating down ten dollars. It provides the support of those families, of course, the individuals who are donating a hundred dollars a month or the individuals who are donating five thousand dollars a year or fifty thousand dollars a year.
Speaker 1:So it's all about building community and what we are asking everyone is that we do consider sponsoring a family. We help patients between five hundred and a thousand dollars each. Now think about that. If you're able to provide your support now, you'll be sponsoring a family so they can go through this difficult time of transplant with your support. So the more individuals and now sponsors we have Now we're not talking about the sponsors of a million dollars, sponsorship to develop research, but it's your hundred dollars, a thousand dollars, ten thousand dollars Now, whatever you can donate, you'll be sponsoring a family now.
Speaker 1:Last year alone, now we're seven hundred and fifty patients and families that we provide financial assistance and that's an increase from two hundred and fifty from the year before. And now that the program is out there and very well known, we expect over a thousand families reaching out to us. So that's why we need the support from everyone, as we did and now with my family here, and we will start running out of money Now. Roosevelt Island community got together group of residents and in fifteen days, they were able to raise forty thousand dollars for my family, and that's what we are doing today. Now we are thinking about those last four hundred individuals who have been afflicted by life threatening disease and landing a hand to them and make sure they go through this, because there are so many patients that now celebrates life and celebrates with us. So that's why it's important that we bring support from all parts of life.
Speaker 2:So we'll definitely make sure that we include the link in the description so folks can go in and just sign up and, as he said, you know whatever your budget allows. If it's ten dollars a check or ten dollars a month or whatever that looks like, it goes a long way. I would like to have a few more questions for you. One I like to prove to people that you don't have to sacrifice personal finances for the sake of impact. Can you give folks an understanding of what a president and executive director of an organization like this can make financially?
Speaker 1:As a nonprofit. You know it depends a lot on the range. Now they are all sides of nonprofits and now in the opinion, the role that you have as well. But you know I've been here twenty two years now with the organization and of course we have to take many different roles as not as active director by the IT, the fundraise and the development. You know the All kinds of work have to do the marketing person so. But we know profit and depends on the budget of the organization, the Q-Rays between the ninety thousand per year and upper and our hundred thousand close to two hundred thousand. It depends on the organization.
Speaker 1:If you ask about the president, is your organization a nonprofit? Now there are millions of dollars, organizations that they solid reach millions. But organizations know this size now usually I've seen between eighty five thousand up to two hundred fifty thousand dollars. So it's a very big range. It just doesn't mean much. But of course it depends a lot on the organization.
Speaker 1:Now I, like I said, you know we have a lot of partnerships with social workers and different activities. That is involved in the funds that we raise. But that's that's what a nonprofit is all about, like there's a matter. There's a matter how much we raise. Now we have our fixed salaries and one thing I can say that I'm very proud of our organization is that knowing that's usually how nonprofits are ranked is that 80 cents of every dollar goes to programs Right, and then about now eleven percent administration in about eight percent or so is fundraising. So that's something that is how nonprofits is. Is is right. It's now what percentage of every dollar actually goes to the programs of the organization. That's why I think that we know, through shard to navigator and all that you know, we see that organizations are platinum. It's a poor disclosure. You know how we operate, where funds come from, where the funds are going to.
Speaker 2:How big is organization?
Speaker 1:So right now, we have a budget of about, you know, seven hundred thousand dollars. You know which. Of course, it depends a lot. We want to help as many patients as possible, so that's what we do requires a lot of more fundraising, but our goal is to reach a million dollars by 2016 and be able to help about a thousand patients. How many employees are you having to? Thank you.
Speaker 2:Got it. That's a lot of work for.
Speaker 1:Yeah, we had two and two and half of last year but because of the increase, we received 1,500 applications, requests last year from all those 250 or so social workers, so we need to bring one more. But yes, and also, not only is the program but also it's our goal to raise now the funds to be able to help the patients.
Speaker 2:Are there any forms of media that could be books, podcasts, newspapers, things that have helped you personally or professionally that you'd like to share?
Speaker 1:Yeah, one that is very I'm sure a lot of people who know it's about emotional intelligence. I think it's very important, especially for the work that we do. And then when I first read the book, it was very important to me to understand the emotions and be able to reflect and understand others as well, especially when people are going through different challenges, and ourselves as well. And in terms of movie, there was one. It's an old one from 2016,. I think is the ultimate gift I've ever heard about. The message of the movie that really brought to me is that life itself, and the experiences that we have in life, is the most important value asset that we have. The movie is about a billionaire who was going to leave all his fortune to his kids, but he left in his testament that his child would have to go through different activities to really understand the value of life and talk about the gift of work for us to value the work we do and make sure that we appreciate the power of our job well done. He had to do all those activities to understand the value and the true gift of life in order to receive all these funds that came from his dad through the lawyers, and the gift of money that by helping people who need $300, $500 before they had all this money. He was a wealthy family and he was just doing whatever. They didn't understand what $300 would mean. On the gift of problems Now how problems? Not only is something that we should avoid and how our pensioners take away the problem from us, but we have to fight for it and be able to resolve the problem, because we're going to be learning from each one of those. And the gift of dreams Now we need to dream with a sense of clarity and purpose that we have. So I mean, it's a very old movie.
Speaker 1:I love movies that are life story and not really much about you know, I stop wars and all that, but now, if you have a chance to watch it, it's definitely a life's lessons and I know that.
Speaker 1:You know everything that my family went through, that I went through. You know we never gave up and we always think not about what can we do for myself, what can I do for others, and what not only helped me with, you know, keeping my sister's memory alive, but also is keep heal. Know that pain that I know for losing my sister and feel that. You know if I can see one child alive and healthy. That's what it means the world to me. You know, there is a very famous quote that says a hundred years for an eye as my car, the car drive, the house I have, we're never going to matter. What's going to matter is the difference that I made on a child's life, and even when I was in high school I learned about that quote and that stick to my head and it's so true. So, but yeah, I mean, if you haven't seen, if you watch, you know, I would love to hear what you and everyone thinks about.
Speaker 2:Awesome. I have not seen it, but I definitely will report back on that. That's awesome. Is there anything we have not covered today that the world should know about?
Speaker 1:Well, I can say that now we all have the power to make a difference in other people's lives, especially save someone's life. It doesn't take much, you know, and anything that we can do for others and the benefit of others, it will definitely come back to us and benefit ourselves. So I think that if there is an organization that you want to get involved, we are one of them, and there are so many great organizations out there. But just think that you know, it's by thinking of all this that you're going to be helping yourself. Now, that's the main message that I want to leave and get involved.
Speaker 2:That's beautiful. Thank you, well said and thank you for taking the time to connect with us today. I hope you enjoyed this episode. If you did, and believe on the mission we're on, please like, rate and subscribe to this podcast on whatever platform you're using, and share this podcast with your friends and your networks. Make sure you follow us on Instagram and LinkedIn at career cheat code and tell us people or careers you would like to see highlighted. See you next week with some more cheat codes, peace.
