April 6, 2024 • 48 mins
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.
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Intro (00:06):
You're listening to.
There's a Lesson in here,Somewhere, a podcast featuring
compelling conversations withexceptional people.
Whether it's an inspirationalachievement, a hardship overcome
or simply a unique perspective,these are stories we can all
learn from.
Here are your hosts, JamieSerino and Carlos Arcila.
Jamie (00:31):
Hello everyone and welcome to.
There's a Lesson in hereSomewhere.
I'm Jamie Serino.
Carlos (00:38):
And Carlos Arcila.
Jamie (00:39):
And we're here today with Airam Da Silva, who is head of
the Icla Da Silva Foundation.
I met Idem when I was incollege.
I remember he walked in theroom and there were a group of
us that had already livedtogether.
He walked in and he was new.
We had a chess point set up.
None of us really were goodchess players, but we just had
(01:01):
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 anyoneelse want to play?
We're like, no, no, we're good.
So then he taught us that movethat three move win.
He taught that.
He taught us that.
(01:22):
And he taught us that move thatthree move win.
He taught us that.
And he taught us how to defendagainst that.
But he still was the reigningchess champion of our room.
So that was good and that washelpful.
But also in meeting items.
So early on in college he wasalready involved in this
(01:43):
foundation that his father hadfounded and we're going to learn
more about that foundation andit helps people that are going
through bone marrow transplants,that need bone marrow
transplants, and we'll learnmore details there.
We'll learn why his fatherformed the foundation and then
why Idom then took it over, andthey're doing some great, great
work, and we'll hear a littlebit more about that.
(02:06):
So at this point I'd like toturn it over to you to do a more
complete introduction ofyourself and tell us a little
bit more about the foundation.
Airam (02:14):
Thank you, jamie, for that introduction and great
memories from college.
Thank you for bringing that up.
It's a pleasure to be hereparticipating with you guys.
I run the Equalleta SilvaFoundation, which was founded by
my father After my sister wasdiagnosed with leukemia back in
(02:34):
Brazil and the only hope for Qwas a bone marrow transplant and
we had to sell everything thatwe have and come to the US to
try to save her life, and I'mhappy to share a little bit more
about this story and where weare today.
Carlos (02:53):
How old were you when this happened?
Airam (02:56):
I was 13 years old and my sister, was two years younger,
was 11.
Oh goodness, I was two yearsyounger I was 11.
Oh goodness.
Jamie (03:06):
So then at that point, your father, I think he felt
like the best treatment wasgoing to be in the United States
.
Airam (03:15):
Yeah, so the doctors told us she just go back a little
bit.
She was taking dance classesand after one of the dance
classes she started feelingpains in her legs and we thought
it was just because she did alot of exercise that day.
We went back home, but in themiddle of the night we woke up
with her screaming in pain.
(03:36):
My parents took her to theemergency room and after a few
blood tests and a few days shewas diagnosed with leukemia.
So my parents decided to.
We live in a small town inBrazil, so we decided to go to
Rio de Janeiro, sao Paulo andother cities that were more
advanced in medicine and theyconfirmed she had leukemia and
(03:59):
the only cure would be a bonemarrow transplant.
Both my brother and I weretested, but we are not a match.
The siblings have a higherchance of being a match.
And then after that my fatherlearned that in the United
States this was back in 1989.
So in 1986, they had started avolunteer bone marrow registry
(04:24):
for patients who do not havedonors in the family.
They could search thatvolunteer marrow registry.
So the doctor introduced us toa doctor in New York and within
three weeks of her diagnosis myparents sold everything that we
had and we came to New York totry to find her a match in the
(04:45):
National Registry here.
Carlos (04:48):
Wow, what did you like?
Can you give us a little bit ofbackground, maybe like a
picture of how it was in Brazil?
I mean, you know you had yourfamily there, obviously, but was
your you know your parents like, were they working for a
company?
Did they have like their ownbusiness?
Or like what was that?
(05:08):
Like Like going througheverything?
Airam (05:11):
right, yeah, well, first my father was one of the very
successful chemists in the sugarand alcohol factory in Brazil,
very well paid.
In the states where we were, welived a very comfortable life.
We used to live by the beachand going to private school, and
this was all a big surprise forus.
(05:33):
And even though we had to selleverything that we had, all our
family and friends started acampaign.
I started a campaign, afundraising campaign, to raise
funds.
My mother and I.
We stayed back.
After my father, my sister andmy brother came to continue with
(05:53):
the fundraising campaign toraise more funds.
We knew how expensive thetreatment was going to be here,
so it wasn't a national news anda national campaign started to
raise as much funds as possible,which we raised about $150,000,
which we probably know it's notenough for a cancer treatment.
But my father always said thatthose are different steps.
(06:17):
First is to find her a cure andtreat her.
Then we worry about how wewould pay for that treatment.
Jamie (06:25):
Right, and so then, what was the situation like in New
York?
And they came to New York andat the time, and just in general
, it's difficult to find a match.
So can you tell us a little bitabout that?
Airam (06:36):
Yeah, first we did not know English, but we came to
Memorial Sloan-Katharine CancerCenter, which was one of the
leading hospitals in the worlddoing bone marrow transplants.
Again, the National Registrystarted in 1986.
This was 1989, three yearslater.
So it was in the beginningstages of the bone marrow
registry and we had to find outwhat she really needed, to find
(07:06):
out if what she really needed.
And the doctors here confirmedthat only a bone marrow
transplant from a donor not inthe family, because there was no
match would save her life.
And unfortunately there wereonly 89,000 donors in the
National Registry here and mostwere Caucasian, not diverse.
So her chances of finding amatch was very slim as well.
(07:27):
So the doctor searched theregistry and confirmed that
there was no match in theregistry.
So what she said is that, youknow, the best chance would have
been within a Brazilian, withinthe Brazilian community,
because we are more likely tomatch someone from the same
racial and ethnic background.
Let's do like the same withhair color, eye color.
So we did not know.
(07:49):
There were so many Braziliansin the US.
And now my father said you knowwell, we need to recruit more
Brazilians here.
So he went to the Brazilianembassy and consulate and asked
them for help.
And that's when one of theemployees said that he was a
member of a Brazilian church inNewark, new Jersey, where he
(08:11):
could start there by organizingblood drives and bone marrow
drives to try to find her amatch.
And that's what they did forabout two years and recruited
thousands of donors, not onlyblood but marrow but
unfortunately a match was notfound.
Jamie (08:27):
And so your sister at 11, diagnosis.
So then, and her health wasdeteriorating over time, I would
imagine.
Airam (08:36):
Yeah, as she was here, you know, the leukemia advanced
and she had to receive high doseof chemo.
You know that's when she losther hair, which she had a kind
of curly hair, and one of herthings 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 asmile on her face, no matter
(08:59):
what was going on, so she had toget it.
She got this wig as a present,but she always, always, she was
always very positive.
Carlos (09:12):
But unfortunately the disease was progressing and her
health was deteriorating.
Yeah, was this the first in thefamily?
Yes, that's uh.
So then you so then when youcame and I know that the that
(09:33):
newark has a big braziliancommunity, so I think that
that's um, can you expand alittle on that?
Like you know the you know Ithink you need to be involved
very much so and you know youneed to go out and kind of visit
the community, and how was thatcampaign like?
Airam (09:49):
Yes, I remember every weekend we were carrying boxes
of, you know, consent forms andmaterial, educational materials
that was were provided to us bythe New York Blood Center at the
time because we partnered withthe New York Blood Center to do
those blood and marrow drives.
And we were partnering mostlywith the Brazilian churches,
because that's where we have ourcommunity, joining on weekends
(10:11):
and then visiting differentchurches making presentations,
sharing her story, and she wasalways present with us.
Of course, the Braziliannewspaper got involved and
expanded the campaign to otherstates as well, especially
Boston and in Florida, withefforts to try to recruit more
donors.
And the more donors we wererecruiting, we thought, the
(10:34):
higher her chances.
The good thing is that welearned that some of those
donors, even though it was not amatch to her, ended up being a
match to other patients and theywere being called to donate for
other patients.
And even though she was only 12,she was mentioning that when
she was cured from leukemia shewanted to start a foundation so
(10:55):
she could continue this work,because she saw that by going
out to the community sharing herstory, asking others to join
and participate, she was savingother lives.
So she was starting to thinkabout others other than herself
and she saw when a man from theBrazilian consulate, for example
, donated his bone marrow, heregistered for her by donating
(11:21):
his bone marrow to an 18-yearyears old college student in
Seattle Washington.
So that motivated her and shesaid I want to start a
foundation on some cure, tocontinue this work so I can save
my life.
Jamie (11:34):
Yeah, so she and your father and you, your whole
family, you were alreadystarting to do the work of the
foundation, just by trying tofind the match for her, and
unfortunately not successful,but you were saving lives,
basically.
Airam (11:50):
Correct.
So unfortunately it got to apoint that she was.
Believe it or not, we used tolive on Roosevelt Island.
For those who know, it's abeautiful island near Manhattan
which is closer to the hospital.
We did not have to take subwayto get to Memorial Sloan, we
could take the beautiful tramwayand she was rollerblading after
(12:12):
going to school.
She was still attending schoolon Roosevelt Island and then she
came home she was out of breath, you know out of breath and
then she was taken to thehospital and then that she
started having difficultbreathing and then after biopsy,
there was liquid in her lungsand the doctor detected that
leukemia had expanded, you knowextended to her lungs, and
(12:35):
within 24, this was late in theday, four or five o'clock now, 5
am the next day she passed away.
So she was from because theleukemia really spread out and
she did not resist.
So, even though she was livinga normal life, smiling and
rollerblading with her friends,she knew that with her wig that
(12:56):
she was very happy with.
Unfortunately, now the leukemiatook over her life.
Jamie (13:02):
And so you know, for anyone that's a parent, you know
hearing, hearing something likethis, it's, it's like you know,
the sort of nightmare scenariohaving a child go through this.
How did your parents deal withthis and how did they react?
Airam (13:20):
Well, even today, 32 years later, my mother had a
very difficult time.
Oh, because of religion hashelped her a lot, but, of course
, being the only daughter, theonly girl you know but my dad
you know through the efforts andto fulfill her dream, that she
always wanted to start afoundation to help others.
(13:41):
To start a foundation to helpothers.
As we were now taking her roomapart, there was a note that we
found that said mom, I'm doingwell, Help my friends.
And she always mentioned thather friends in the hospital was
the one that she wanted to help.
So that was the motivation tostart the foundation and that's
where my father felt that it wastime for him to dedicate this
(14:05):
time.
Also, we went back to Brazilbecause he wanted us to return
to Brazil, but when he came backat the time, it was a tape
recorder machine.
On the phone it was full ofmessages of other families
asking us to do drives for theirson or daughter as well, who
were looking for a match.
So a number of things that shealways mentioned, even though
(14:28):
she was 12, that she wants tohelp other patients.
We saw that this man from theBrazilian consulate donated bone
marrow at the time and saved alife, and the recipient is still
alive today.
He's a grandfather, he's stillinvolved with us, volunteering,
speaking for us, and also thenote that was found in her room.
That was the main motivation,of course, to continue the work
(14:52):
that she always wished to doonce she was cured.
Jamie (14:56):
That's really powerful.
And so, then, that inspiredyour father.
And, like I said, you were allalready doing the work, work.
And so then, how soon after didhe officially launch the
foundation?
Airam (15:09):
yeah.
So she passed away on june 21st2001 and the foundation
established and received the501c3 non-profit status on june
22nd 1992, exactly one yearafter she passed away so you
mean 2002 or she passed in 91she passed in 91.
(15:32):
The foundation started in 1992.
Jamie (15:35):
gotcha.
Um, so how did the foundation?
Because I know I'd like you totake us through how it has
changed, but can can you talk alittle bit about those early
days?
Airam (15:48):
Yeah, so we continue to pay awareness and education in
the community about the need formore bone marrow donors because
there were so many otherpatients who were still looking
for a match.
There were so many otherpatients who were still looking
for a match and more and moredonors were being added to the
registry and more patients werereceiving now a bone marrow
(16:10):
transplant that they needed.
And, of course, united Statesbone marrow registry and we
(16:32):
became an official partnercreating awareness and education
about the need for bone marrowdonors.
Carlos (16:42):
And was that like a full-time committed role with
your father and those involved?
Or was it a part-time thingbecoming full-time thing?
Airam (16:56):
Yes, so initially he was just a volunteer.
My mother was working by thenat the Brazilian Consulate in
(17:18):
New York and my father was avolunteer for many years until,
of course, we had thispartnership and we started to
receive funding to continue thework that we did and through
fundraising events andactivities that we started to do
that, he started to becomepart-time and became full-time,
but he was the only employeeworking with volunteers for all
that time, until I was done withmy graduate school, that I
joined the organizationfull-time together with him to
continue the work that we weredoing in 2001.
(17:40):
2001.
In 2001.
Carlos (17:43):
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 yourcalling?
Or did you know from the verybeginning that you wanted to do
that and that?
Airam (18:01):
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 toBinghamton 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 junioryear, senior year, in college,
(18:23):
and throughout throughout mycollege years and Jamie helped
me many times through bonemarrow drives and putting flyers
together to organize a bonemarrow in college I noticed that
there were so many doctors outthere and that was not the
reason my sister passed away.
She passed away because therewas not enough donors, not much
(18:43):
awareness and education in thecommunity.
So I felt that what I reallywanted to do was to recruit more
donors so the doctors wouldhave the tools to save more
lives.
And with that, that's where Iapplied to go to New York
Medical College and got mymaster's degree in public health
(19:04):
York Medical College.
And got my master's degree inpublic health because my desire
was to work in the community toreally create more awareness,
education and increase thediversity and the number of
donors in the registry, becausethat was the reason that my
sister passed away.
Jamie (19:20):
And so could you tell us a little bit about the progress
that was made, not just by yourfoundation but just in general,
as that donor pool grew and grewover that time?
Airam (19:32):
Yeah.
So after I joined theorganization in 2001, we worked
together, my father and I, togrow the organization to become
the largest recruitment centerin the United States.
We are adding the largestnumbers of donors in the country
.
We expanded through all thestates.
Now we start with Boston, newJersey, florida, california,
(19:54):
texas and Puerto Rico,especially in cities that were
very diverse, because diversemakes a player big role, as I
mentioned before.
Because diverse makes a play abig role, as I mentioned before
and then, and of course throughthe efforts of Be the Match and
all the other registry, thenumber of donors grew and the
chances of patients to find amatch continue to improve.
(20:18):
But also through advances inmedicine and other types of
transplants and medications,patients now have a much greater
chance not only of finding amatch but also, if my sister was
here today, she could receive abone marrow transplant from my
mother or my father, becausenowadays it doesn't have to be
(20:38):
100% match Through the advancesin medicine and as well as the
medications that are out there,there are so many different
treatments that she could havereceived that treatment and with
hopes of being cured.
So we have many patients nowthat we have been working for
over 10 years that recently asrecently as two years ago and
(21:02):
last year they now have beenreceiving a transplant from
their parents and they are doingreally well.
So that's fantastic that theadvances in medicine and that
continue the diversity of theregistry.
However, not every patient hasa parent or a sibling or someone
who could donate.
(21:22):
That is within the age limit todonate as well, so that's why
there's still a need for peopleto become bone marrow donors.
Jamie (21:31):
Yep.
So what was it that changed?
Do you know, it's probablyhighly technical, so I don't
want to put you on the spot, butwhat was it that changed where
you don't need to be a perfectmatch anymore?
Airam (21:46):
Well, what you're really doing with a bone marrow
transplant is that you'redestroying the bone marrow of
the patient and you're findingsomeone who's genetically
matched it's called HLA humanleukocyte antigen that they will
be receiving those cells fromthe donor and the body has to
say, oh, those are my cells.
(22:06):
This is not an infection,that's not a bacteria that we
reject.
So now, through medicine.
Of course it's much morecomplex than I'm going to
explain, but the doctors areable to do a few things.
One first they are able toselect only the cells that are a
match.
So they remove the cells thatare not a match, but also they
(22:27):
are medicine.
That medication that avoidsthat.
Jamie (22:30):
That rejection will help boost this immune system of the
patient, and with the new bonemarrow, it helps rebuild the
immune system of the patientokay, so, yeah, so they have the
technology to actually go intothe bone marrow and remove the
stuff that would get rejectedand keep the stuff that wouldn't
(22:52):
.
That's amazing, okay.
So then, with that developmentthen your foundation then began
to shift because, although yousaid recruiting donors is still
paramount, it's not as criticalas it was.
So then your foundation beginsto get involved in other things.
Airam (23:13):
Definitely 2021, of course, right after COVID, and
COVID made all of us have towork to make sure that we are
able to recruit donors online,as many things out there and
being able to reach a verydifferent audience because we
could not be at college campuseswas a big change for us.
(23:35):
Also, it's very important thatwe get young donors.
The younger the donor is, thebetter outcomes are for patients
.
The donor is, the betteroutcomes are for patients.
So with COVID, we could not beout there at corporations,
especially campus known ascampus.
So we, the National Register,really developed the ability for
people to join online bysending a swab kit by mail and
(23:59):
mail back.
But also the need for donorswas not as great to be out there
in the community.
There are other reasons, suchas when a donor join online,
they are more committed, becausewhen a person donates through
the swab kit to join theregistry, it's just providing
that bone marrow type.
(24:19):
They are not donating yet andthat person might be called only
10, 15, 20 years later.
So we learned that by joiningonline they have to wait until
the SWAT kids come back, comehome.
They have to do it, they haveto send back.
So the commitment of the donor,which is very critical, was
much higher.
So there were some changeswhere the National Register
(24:39):
decided to focus a lot online inspecific groups.
There was a decrease in age.
At the time we used to recruitdonors between 18 and 60 years
old.
Now it's between 18 and 35years old to be able to join the
registry.
So with that change into 2021,the organization is no longer in
(25:03):
partnership with Be the Matchto recruit donors.
But we learned that manypatients now were able to find a
match and many patients canreceive a transplant.
But there were other barriersto a number of patients and
those barriers were financialbarriers.
We see that a single mom withtwo kids and one is diagnosed
(25:25):
with leukemia or a disease thatrequire bone marrow transplant,
or the mom is diagnosed with acondition she has to stop
working and when she stoppedworking, with a child in the
hospital being treated for bonemarrow transplant, she still
have rent to pay, she still havethe transportation, no meals,
no expenses.
So we found that many patientshad that barrier, even though
(25:48):
they had a donor, they had atransplant center, they have the
best doctors to treat them, butthe barrier is that they could
not move on with transplant.
Our patient needs to make surethat they have a clean, safe
home to return after a bonemarrow transplant, because in a
bone marrow transplant, becausein the bone marrow transplant
they are destroying the entireimmune system of the patient.
(26:08):
So we have to make sure thatthe rent's being paid, because
many patients we receive todaythe parents have to stop working
.
They ended up with an evictionletter and some of them become
homeless because they cannotafford.
So the foundation today weraise funds to make sure that we
(26:29):
provide the financialassistance to the patients.
We have partnered with 240social workers throughout the
country, 140 hospitals, thatwhen they identify a patient or
family who are about to receivea transplant, a patient or
family who are about to receivea transplant but are faced with
some financial barriers,out-of-pocket expenses that are
not covered by insurance, theyapply and reach out to us for us
(26:53):
to provide that support so thatthere is no barrier to
transplant, so they can continueand schedule that transplant
date.
Jamie (27:00):
Yeah, that's great Because I mean, there's so much
to think of around the entiresituation.
So a lot of times you start offwith like the medical model of
looking at a disease so there'ssomething wrong, let's fix it.
But then one sort of ringaround that is financial, and
you said you know your familyhad to sell everything, move um,
(27:24):
and and you're?
You're talking about peoplethat might not have the money to
pay rent.
They don't have the money tostop working, um.
And in another conversation yousaid that um, I believe you
said the number one reason forpeople declaring bankruptcy is
cancer yeah, yeah, medicaltreatment.
Airam (27:43):
There are some conditions that someone, such as cancer.
It's one of them that getdiagnosed with cancer that you
know the expenses are so highthey're not able to work and
ended up filing bankruptcy.
Not only that, a number ofpatients, do you know, ended up
not receiving the treatmentbecause they could not afford.
Or they do not take themedications because they could
(28:03):
not afford, or they do not takethe medications that they have
needed and required fortreatment because they cannot
afford.
So the financial stress ofpatients facing cancer is
tremendous.
Carlos (28:15):
You were kind of hitting on some of this, but can you
perhaps maybe frame up like itbegan with you know, your sister
, one patient, one case, andmaybe a look at the numbers of
where it's grown to you know,today, now the organization is
(28:37):
in so many locations you know somany parts around the world,
has helped, how many patientshas raised that Maybe you can
give us a good sense of that forus.
Airam (28:47):
Yeah.
So the first years of thefoundation, our main goal was to
recruit donors right,especially diverse donors, and
through that work we were ableto provide recruit donors that
donated to 1,000 patients.
So 1,000 patients received abone marrow transplant from
donors that we have recruited.
Once we start providingfinancial assistance to patients
(29:11):
last year was the first year ofour program that we call ECLA
Cares we provide financialassistance up to $1,000 to 240
families this year.
Last week we surpassed 710families and patients that
received this $1,000, up to$1,000 in financial assistance
(29:33):
and those patients there aresome criteria.
One of the criteria is thatthey have to be 400% of the
national poverty level, sothere's a low socioeconomic
status who really struggle to beable to receive the treatment
because they cannot afford theeveryday expenses in the parking
(29:54):
transportation.
But we received over 1,400applications and that number
continues to grow.
One thing that is important isthat our organization is focused
on patients who are receiving abone marrow transplant,
regardless of their diagnosis.
As you probably know a lot offoundations they provide support
(30:17):
for patients that aredisease-specific Leukemia and
Informed Society is an example.
They are specific disease thatneeds to qualify for them to
receive support.
In many other organizations, wefelt that we need to find where
is the gap.
We do not want to replicate theword of all those wonderful
organizations out there.
(30:38):
And when we said regardless ofdiagnosis, we found that
patients, for example, withsickle cell, there's not much
where they can turn to forfinancial assistance.
So we are one of the feworganizations that are providing
this financial assistance forpatients receiving a bone marrow
transplant that cannot turnsomeplace else.
So we are experiencing a hugegrowth, as I shared with you,
(31:02):
from 240 to over 700 patients,and next year it will be a much
higher number.
But of course, fundraisingdoesn't grow as much as they
need.
So the need is great and that'swhy we need to continue to
request support from everyone sowe can provide the support for
those patients.
Jamie (31:20):
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 moneythat is self-sustaining.
Your foundation has a littlebit of that or none of that, but
you do fundraising and you askfor not only you know people
(31:42):
like bone marrow donations, butfinancial donations.
Airam (31:47):
Yeah, so there are a lot of private foundations or family
foundations, that many of themprobably you know, the Bill
Gates and the Alinda Foundationcomes from wealthy families not
the case of my family.
So we are a community-basedfoundation.
We rely on donations fromindividuals mostly, but also
from corporations and otherfoundations that we apply for
(32:08):
grants to raise funds so that wecan support those patients and
families.
Jamie (32:16):
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 youknow, in another conversation
that we had, you said that youdo find yourself providing some
of that.
You know emotional resilienceand even grief, support and
(32:39):
things like that, and a lot oftimes that goes overlooked as
well, right, so like everyone'salways focused on the medical
model, so much that thefinancial piece of it and then
the emotional piece of itsometimes doesn't get
acknowledged, but you're alsoproviding that.
Can you tell us a bit moreabout that?
Airam (32:58):
Definitely we.
Also, although we are a verysmall organization we are
Stafford three.
Now we have this personalcontact with every patient that
reach out to us.
I personally, being a patientfamily, 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 schooland my parents were not there,
(33:20):
you know, for lunch, you knowfor anything, my brother and I,
you know, had to figure it out.
So we know that cancer can bevery lonely.
So as we talk to families andwe interview them when we
provide this support, some ofthem saying that, yes, the
financial support is amazing,but just know that someone care
(33:42):
for them.
It means a lot for them.
Many times they don't know whatto do, who to talk to, and many
families reach out to us.
A single mom of twins that bothneed a bone marrow transplant
was in despair, had no idea whatto do.
They received a transplant andthey relapsed.
(34:02):
They need a second transplant.
She had already decided thatshe's not going to move forward,
she's not going to do a secondtransplant, because she could
not deal with this again.
It was not until she learnedabout us.
We provide financial assistancefor her, rent, for
transportation, but we kept intouch with her and encouraging
her that you know everything'sgoing to be okay, that she'll
(34:25):
find the resources, that herkids were going to receive the
transplant and do fine and theyare doing amazing and she
decided to go on.
Sometimes she calls justbecause she had bad news and she
did not know anyone to sharethose news, even though she had
family and friends, was notsomeone that went through this,
that understands what's going on.
(34:46):
So it's more about not onlymyself, but myself and our team
members that are always there tolend a ear, for them to share
with us what their thoughts andconcerns are.
We also are always looking forother resources for them to
expand what we do, alwayslooking for other resources now
(35:07):
for them to expand what we do.
Jamie (35:16):
Yeah, so then do you stay in touch with the families?
Airam (35:17):
then also, as they go through the process and continue
on?
Yes, definitely, and we know howimportant it is for someone
who's starting that treatment toreceive a bone marrow
transplant to hear from others.
So we do host luncheons in manydifferent parts of the country
called now many times called Mixand Match for patients.
So we invite patients who havereceived the treatment and they
are finding a cure, maybe five,10 years now.
(35:40):
We invite current patients whoare receiving treatment and
those who are starting thetreatment to receive a bone
marrow transplant and we askthem to share their story.
It's a patient luncheon that weconnect them so they provide
more of a support for each otherand they see that they're not
alone.
They can see that others wentthrough this.
They also have financialchallenges and difficulties.
(36:01):
They have fear, as they have,and they get to connect and get
to know each other because weknow exactly how lonely it was
back then and we always reflectback and you know, as a young,
12 years old, 13 years old, buteven for adults, and we have
seen the response from that andmake sure in connecting people
because we are very small, butif we connect everyone and form
(36:24):
a community of people receivingbone marrow transplant.
We can definitely empower thosepatients to go through such a
difficult challenge in theirlives.
Carlos (36:35):
So if you were to look at kind of the next chapter of
the organization, the foundation, can you maybe lay out that
vision?
Airam (36:46):
Yes, I mean we know the need is great.
Of course, the expenses ofpatients going through a
treatment is huge.
So we definitely need to pursue, raise more funds, create more
partnerships and, as we continueto hear that, you know bone
marrow transplant continues toincrease, the more and more
(37:08):
disease are treatable throughbone marrow transplant, we need
to continue to provide thatsupport.
So when we have not reached allthe hospitals or social workers
or places where we can connectwith patients, so that number
continues to increase.
For you to have an idea, thereare about 20,000 bone marrow
(37:29):
transplants per year in the USand there's a long way to go.
So we provide $1,000, not tominimize what we do.
But someone who needs help withrent, especially with places
like New York City, chicago,California, it helps.
It helps them avoid thateviction, but the expenses are
(37:52):
so much greater.
Or when they need to relocate,someone who lives upstate New
York needs to come down to NewYork City for treatment with the
family.
So the financial need is muchgreater than we can actually
provide at the moment.
So our vision is that we aregoing to be side-by-side with
the patients, raise as muchfunds as possible, provide as
(38:13):
much logistical, emotional andfinancial support as we can.
Jamie (38:18):
Yeah, so are there?
I'm sure you have like, yourfrustrations with, like, our
healthcare system, right, andyou probably have an opinion
about the fact that a foundationlike yours is even necessary
like, from the financialstandpoint, any kind of
roadblocks or anything that youwould just sort of add to, I
(38:40):
guess, probably what we alreadyknow about the healthcare system
.
Airam (38:45):
Yeah, I mean I think that it's great that an insurance is
paying millions of dollars overtreatment, but sometimes it's
being able to hire a caregiverthat the insurance does not
cover, that a transplant isbeing postponed, and when we
come in and say you can hire acaregiver, which is required
(39:06):
24-hour caregiver for thepatient to receive that
transplant.
So it's difficult to understandand know how that works.
And now, of course, I'm not anexpert on how insurance could.
Some insurance are starting toprovide more assistance than
out-of-pocket expenses but it'ssomething that it needs to be
looked upon, especially from thehuman level.
(39:29):
You know cancer affects theentire family, not only that
individual.
It's not only the treatment youknow there are so many other
things that are affected butdefinitely something that needs
to be looked at.
Only the treatment you knowthere are so many other things
that are affected.
So, but definitely somethingthat needs to be looked at and
you know, and it's as you, asyou mentioned, it's it's complex
, so to be able to provide allthe support that is needed.
Jamie (39:50):
Yep, and you know you, you mentioned that a person
would need to be at a certainlike poverty level, right, and
so I think that brings up thenotion, you know, that things
are not really equal and there's, you know, disproportion.
So it's great that you'rehelping that group of people,
(40:10):
and I think we see statisticsthat certain groups of people
get affected more by disease orby trying to get the treatment
to that disease.
So is there anything more youcould add?
You could add to that piece ofthe puzzle.
Airam (40:23):
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 patientsare from ethnic diverse
background, mostly Hispanic,african-american, asian and,
like sickle cell affects, mostlyafrican-american.
And many times now thetreatment is there, the donor is
(40:45):
there like that's what mysister 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 forall um especially for those
communities that you know theyit's.
It's it's because of who theyare that is affecting.
They might even lose theirlives.
Carlos (41:07):
Is there a partnership that you're doing with another
organization, kind of going tothe needed families together?
Airam (41:17):
Yeah, so we have identified all the organizations
that provide all the kind ofsupport, all supports that we
provide as well, because, like Isaid, sometimes the $1,000 is
not enough, so we always referthem to others and they get some
from us Although ours is at ahigher level than many other
organizations in terms of theirdollar per patient but when we
(41:41):
add the different organizations,they do get all the support or
a good portion of the supportthat is needed.
So we're always looking toshare the need with other
organizations and to provide thebest resources for the patient.
Jamie (41:57):
Yeah, so is there anything that you would say to
you know a parent whose child isgoing 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 bonemarrow?
Airam (42:14):
Yes, the main thing is, like you know I remember my
father always mentioned that youknow, the first step is to get
her treatment and cure her, nomatter how much it was going to
cost.
And then we worry about howit's going to cost my brother
and myself.
We pay for the rest of ourlives that treatment.
(42:34):
I think there is hope and thereis support out there.
I think there is hope and thereis support out there and I
think that many families need toadvocate for themselves and ask
, you know, ask questions, askfor resources, because I know
those who really look for it andgo out there.
You know they are able toidentify.
(43:03):
You know, sometimes, althoughit's very difficult, you know,
going through a cancer treatment, seeing the ones suffering the
time that they have to take offout from work, you know
sometimes they don't feel thereis much hope out there.
But I see that, as the familiesreally advocate for their loved
ones or for themselves, youknow they do find a way.
They are good people out there,they are good organizations out
there and the most importantthing is that you know is to
keep hope, faith that thingswill go well, that they'll do
(43:23):
their best, and you know not toalthough it's difficult to say
that not to give up.
You know that there are a lotof people that are out there to
be able to support and, you know, for those who have faith, know
that god watching over us willdefinitely, you know, get them
to to a better place yeah, Ithink it's just you know one
(43:48):
thing that that comes out of.
Jamie (43:50):
What's wonderful about this is you know your sister's
life, what she wanted, that notethat you know from that so much
was born and so many lives wereaffected and improved.
You know so I think that'sthat's really powerful.
So you, your family, must feel,you know, pretty proud about
that.
Carlos (44:11):
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 thisfoundation, kind of this, you
know, which you're leading today.
Airam (44:30):
Yes, and now that I am also a dad of two, you know I
understand more what a fatherwould do.
I understand more what a fatherwould 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 ourkids as well.
(44:50):
So I do encourage those whohave not joined the registry yet
or not supporting thoseorganizations.
You know, if I ever need a bonemarrow transplant, I'm much
more confident now, with aregistry of over $32 million
worldwide, that all theregistries are connected.
I have a much better chance.
So, but there's still patientswho cannot find a match right
(45:13):
and it's providing support tothe organization and many other
organizations that you know wehave to always think about
others because it can affect us.
We never thought that we haveto leave that beautiful beach in
Brazil with our family andfriends, you know, to be able to
deal with this.
So definitely a lesson learned,and I know that you know even
(45:36):
today.
You know I was much younger.
Learn, and I know that you knoweven today.
You know I was much younger.
But 32 years later, I see thatmy 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 Iget here.
We thank you for that supportthat allowed me to receive my
transplant and many patientscelebrating that they are
healthy and alive.
(45:57):
Today, many patients celebratingthat they are healthy and alive
today, so it's very encouragingand I think that you know
there's nothing else that Iwould like to be doing than this
work today.
Jamie (46:13):
That's great, Airam, thank you very much for joining
us.
It was really enlightening andvery touching to hear the story
and the history and just it's soimpressive and very touching to
hear the story and the historyand just it's so impressive
everything your organization isdoing, from the financial
support to the emotional support, the community support, and
that's growing and growing andit's just really impressive.
And I want to thank you forspeaking with us today.
Airam (46:34):
No, I thank you both, because the only way we are able
to do this today is because ofthe support of individuals like
you, who are sharing their storyand encourage people not only
to support the organization butbecome bone marrow donors as
well, and the support of all thecommunity and all the patients
who are sharing their story, sothat we all can come together
(46:55):
for the benefit of one.
Jamie (46:57):
And what is the website that people can go to?
Airam (47:01):
It's www.
icla.
org, so icla.
org.
Great, okay, well, thanks again, and any support, no matter
what size of donation, it willmake a big difference.
(47:21):
Just imagine it can be a lunchfor a parent who is in the
hospital with $10 a month.
We have monthly donations, orit can be $10 million each in
the backs of any family.
So thank you.
Jamie (47:34):
Yeah, Okay, Thanks everybody for joining us today.
Airam (47:37):
Thank you.
Jamie (47:38):
See you next time.
Airam (47:40):
Bye-bye, take care.
You're listening to.
There's a Lesson in here,Somewhere, a podcast featuring
compelling conversations withexceptional people.
Whether it's an inspirationalachievement, a hardship overcome
or simply a unique perspective,these are stories we can all
learn from.
Here are your hosts, JamieSerino and Carlos Arcila.
Jamie (00:31):
Hello everyone and welcome to.
There's a Lesson in hereSomewhere.
I'm Jamie Serino.
Carlos (00:38):
And Carlos Arcila.
Jamie (00:39):
And we're here today with Airam Da Silva, who is head of
the Icla Da Silva Foundation.
I met Idem when I was incollege.
I remember he walked in theroom and there were a group of
us that had already livedtogether.
He walked in and he was new.
We had a chess point set up.
None of us really were goodchess players, but we just had
(01:01):
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 anyoneelse want to play?
We're like, no, no, we're good.
So then he taught us that movethat three move win.
He taught that.
He taught us that.
(01:22):
And he taught us that move thatthree move win.
He taught us that.
And he taught us how to defendagainst that.
But he still was the reigningchess champion of our room.
So that was good and that washelpful.
But also in meeting items.
So early on in college he wasalready involved in this
(01:43):
foundation that his father hadfounded and we're going to learn
more about that foundation andit helps people that are going
through bone marrow transplants,that need bone marrow
transplants, and we'll learnmore details there.
We'll learn why his fatherformed the foundation and then
why Idom then took it over, andthey're doing some great, great
work, and we'll hear a littlebit more about that.
(02:06):
So at this point I'd like toturn it over to you to do a more
complete introduction ofyourself and tell us a little
bit more about the foundation.
Airam (02:14):
Thank you, jamie, for that introduction and great
memories from college.
Thank you for bringing that up.
It's a pleasure to be hereparticipating with you guys.
I run the Equalleta SilvaFoundation, which was founded by
my father After my sister wasdiagnosed with leukemia back in
(02:34):
Brazil and the only hope for Qwas a bone marrow transplant and
we had to sell everything thatwe have and come to the US to
try to save her life, and I'mhappy to share a little bit more
about this story and where weare today.
Carlos (02:53):
How old were you when this happened?
Airam (02:56):
I was 13 years old and my sister, was two years younger,
was 11.
Oh goodness, I was two yearsyounger I was 11.
Oh goodness.
Jamie (03:06):
So then at that point, your father, I think he felt
like the best treatment wasgoing to be in the United States
.
Airam (03:15):
Yeah, so the doctors told us she just go back a little
bit.
She was taking dance classesand after one of the dance
classes she started feelingpains in her legs and we thought
it was just because she did alot of exercise that day.
We went back home, but in themiddle of the night we woke up
with her screaming in pain.
(03:36):
My parents took her to theemergency room and after a few
blood tests and a few days shewas diagnosed with leukemia.
So my parents decided to.
We live in a small town inBrazil, so we decided to go to
Rio de Janeiro, sao Paulo andother cities that were more
advanced in medicine and theyconfirmed she had leukemia and
(03:59):
the only cure would be a bonemarrow transplant.
Both my brother and I weretested, but we are not a match.
The siblings have a higherchance of being a match.
And then after that my fatherlearned that in the United
States this was back in 1989.
So in 1986, they had started avolunteer bone marrow registry
(04:24):
for patients who do not havedonors in the family.
They could search thatvolunteer marrow registry.
So the doctor introduced us toa doctor in New York and within
three weeks of her diagnosis myparents sold everything that we
had and we came to New York totry to find her a match in the
(04:45):
National Registry here.
Carlos (04:48):
Wow, what did you like?
Can you give us a little bit ofbackground, maybe like a
picture of how it was in Brazil?
I mean, you know you had yourfamily there, obviously, but was
your you know your parents like, were they working for a
company?
Did they have like their ownbusiness?
Or like what was that?
(05:08):
Like Like going througheverything?
Airam (05:11):
right, yeah, well, first my father was one of the very
successful chemists in the sugarand alcohol factory in Brazil,
very well paid.
In the states where we were, welived a very comfortable life.
We used to live by the beachand going to private school, and
this was all a big surprise forus.
(05:33):
And even though we had to selleverything that we had, all our
family and friends started acampaign.
I started a campaign, afundraising campaign, to raise
funds.
My mother and I.
We stayed back.
After my father, my sister andmy brother came to continue with
(05:53):
the fundraising campaign toraise more funds.
We knew how expensive thetreatment was going to be here,
so it wasn't a national news anda national campaign started to
raise as much funds as possible,which we raised about $150,000,
which we probably know it's notenough for a cancer treatment.
But my father always said thatthose are different steps.
(06:17):
First is to find her a cure andtreat her.
Then we worry about how wewould pay for that treatment.
Jamie (06:25):
Right, and so then, what was the situation like in New
York?
And they came to New York andat the time, and just in general
, it's difficult to find a match.
So can you tell us a little bitabout that?
Airam (06:36):
Yeah, first we did not know English, but we came to
Memorial Sloan-Katharine CancerCenter, which was one of the
leading hospitals in the worlddoing bone marrow transplants.
Again, the National Registrystarted in 1986.
This was 1989, three yearslater.
So it was in the beginningstages of the bone marrow
registry and we had to find outwhat she really needed, to find
(07:06):
out if what she really needed.
And the doctors here confirmedthat only a bone marrow
transplant from a donor not inthe family, because there was no
match would save her life.
And unfortunately there wereonly 89,000 donors in the
National Registry here and mostwere Caucasian, not diverse.
So her chances of finding amatch was very slim as well.
(07:27):
So the doctor searched theregistry and confirmed that
there was no match in theregistry.
So what she said is that, youknow, the best chance would have
been within a Brazilian, withinthe Brazilian community,
because we are more likely tomatch someone from the same
racial and ethnic background.
Let's do like the same withhair color, eye color.
So we did not know.
(07:49):
There were so many Braziliansin the US.
And now my father said you knowwell, we need to recruit more
Brazilians here.
So he went to the Brazilianembassy and consulate and asked
them for help.
And that's when one of theemployees said that he was a
member of a Brazilian church inNewark, new Jersey, where he
(08:11):
could start there by organizingblood drives and bone marrow
drives to try to find her amatch.
And that's what they did forabout two years and recruited
thousands of donors, not onlyblood but marrow but
unfortunately a match was notfound.
Jamie (08:27):
And so your sister at 11, diagnosis.
So then, and her health wasdeteriorating over time, I would
imagine.
Airam (08:36):
Yeah, as she was here, you know, the leukemia advanced
and she had to receive high doseof chemo.
You know that's when she losther hair, which she had a kind
of curly hair, and one of herthings 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 asmile on her face, no matter
(08:59):
what was going on, so she had toget it.
She got this wig as a present,but she always, always, she was
always very positive.
Carlos (09:12):
But unfortunately the disease was progressing and her
health was deteriorating.
Yeah, was this the first in thefamily?
Yes, that's uh.
So then you so then when youcame and I know that the that
(09:33):
newark has a big braziliancommunity, so I think that
that's um, can you expand alittle on that?
Like you know the you know Ithink you need to be involved
very much so and you know youneed to go out and kind of visit
the community, and how was thatcampaign like?
Airam (09:49):
Yes, I remember every weekend we were carrying boxes
of, you know, consent forms andmaterial, educational materials
that was were provided to us bythe New York Blood Center at the
time because we partnered withthe New York Blood Center to do
those blood and marrow drives.
And we were partnering mostlywith the Brazilian churches,
because that's where we have ourcommunity, joining on weekends
(10:11):
and then visiting differentchurches making presentations,
sharing her story, and she wasalways present with us.
Of course, the Braziliannewspaper got involved and
expanded the campaign to otherstates as well, especially
Boston and in Florida, withefforts to try to recruit more
donors.
And the more donors we wererecruiting, we thought, the
(10:34):
higher her chances.
The good thing is that welearned that some of those
donors, even though it was not amatch to her, ended up being a
match to other patients and theywere being called to donate for
other patients.
And even though she was only 12,she was mentioning that when
she was cured from leukemia shewanted to start a foundation so
(10:55):
she could continue this work,because she saw that by going
out to the community sharing herstory, asking others to join
and participate, she was savingother lives.
So she was starting to thinkabout others other than herself
and she saw when a man from theBrazilian consulate, for example
, donated his bone marrow, heregistered for her by donating
(11:21):
his bone marrow to an 18-yearyears old college student in
Seattle Washington.
So that motivated her and shesaid I want to start a
foundation on some cure, tocontinue this work so I can save
my life.
Jamie (11:34):
Yeah, so she and your father and you, your whole
family, you were alreadystarting to do the work of the
foundation, just by trying tofind the match for her, and
unfortunately not successful,but you were saving lives,
basically.
Airam (11:50):
Correct.
So unfortunately it got to apoint that she was.
Believe it or not, we used tolive on Roosevelt Island.
For those who know, it's abeautiful island near Manhattan
which is closer to the hospital.
We did not have to take subwayto get to Memorial Sloan, we
could take the beautiful tramwayand she was rollerblading after
(12:12):
going to school.
She was still attending schoolon Roosevelt Island and then she
came home she was out of breath, you know out of breath and
then she was taken to thehospital and then that she
started having difficultbreathing and then after biopsy,
there was liquid in her lungsand the doctor detected that
leukemia had expanded, you knowextended to her lungs, and
(12:35):
within 24, this was late in theday, four or five o'clock now, 5
am the next day she passed away.
So she was from because theleukemia really spread out and
she did not resist.
So, even though she was livinga normal life, smiling and
rollerblading with her friends,she knew that with her wig that
(12:56):
she was very happy with.
Unfortunately, now the leukemiatook over her life.
Jamie (13:02):
And so you know, for anyone that's a parent, you know
hearing, hearing something likethis, it's, it's like you know,
the sort of nightmare scenariohaving a child go through this.
How did your parents deal withthis and how did they react?
Airam (13:20):
Well, even today, 32 years later, my mother had a
very difficult time.
Oh, because of religion hashelped her a lot, but, of course
, being the only daughter, theonly girl you know but my dad
you know through the efforts andto fulfill her dream, that she
always wanted to start afoundation to help others.
(13:41):
To start a foundation to helpothers.
As we were now taking her roomapart, there was a note that we
found that said mom, I'm doingwell, Help my friends.
And she always mentioned thather friends in the hospital was
the one that she wanted to help.
So that was the motivation tostart the foundation and that's
where my father felt that it wastime for him to dedicate this
(14:05):
time.
Also, we went back to Brazilbecause he wanted us to return
to Brazil, but when he came backat the time, it was a tape
recorder machine.
On the phone it was full ofmessages of other families
asking us to do drives for theirson or daughter as well, who
were looking for a match.
So a number of things that shealways mentioned, even though
(14:28):
she was 12, that she wants tohelp other patients.
We saw that this man from theBrazilian consulate donated bone
marrow at the time and saved alife, and the recipient is still
alive today.
He's a grandfather, he's stillinvolved with us, volunteering,
speaking for us, and also thenote that was found in her room.
That was the main motivation,of course, to continue the work
(14:52):
that she always wished to doonce she was cured.
Jamie (14:56):
That's really powerful.
And so, then, that inspiredyour father.
And, like I said, you were allalready doing the work, work.
And so then, how soon after didhe officially launch the
foundation?
Airam (15:09):
yeah.
So she passed away on june 21st2001 and the foundation
established and received the501c3 non-profit status on june
22nd 1992, exactly one yearafter she passed away so you
mean 2002 or she passed in 91she passed in 91.
(15:32):
The foundation started in 1992.
Jamie (15:35):
gotcha.
Um, so how did the foundation?
Because I know I'd like you totake us through how it has
changed, but can can you talk alittle bit about those early
days?
Airam (15:48):
Yeah, so we continue to pay awareness and education in
the community about the need formore bone marrow donors because
there were so many otherpatients who were still looking
for a match.
There were so many otherpatients who were still looking
for a match and more and moredonors were being added to the
registry and more patients werereceiving now a bone marrow
(16:10):
transplant that they needed.
And, of course, united Statesbone marrow registry and we
(16:32):
became an official partnercreating awareness and education
about the need for bone marrowdonors.
Carlos (16:42):
And was that like a full-time committed role with
your father and those involved?
Or was it a part-time thingbecoming full-time thing?
Airam (16:56):
Yes, so initially he was just a volunteer.
My mother was working by thenat the Brazilian Consulate in
(17:18):
New York and my father was avolunteer for many years until,
of course, we had thispartnership and we started to
receive funding to continue thework that we did and through
fundraising events andactivities that we started to do
that, he started to becomepart-time and became full-time,
but he was the only employeeworking with volunteers for all
that time, until I was done withmy graduate school, that I
joined the organizationfull-time together with him to
continue the work that we weredoing in 2001.
(17:40):
2001.
In 2001.
Carlos (17:43):
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 yourcalling?
Or did you know from the verybeginning that you wanted to do
that and that?
Airam (18:01):
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 toBinghamton 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 junioryear, senior year, in college,
(18:23):
and throughout throughout mycollege years and Jamie helped
me many times through bonemarrow drives and putting flyers
together to organize a bonemarrow in college I noticed that
there were so many doctors outthere and that was not the
reason my sister passed away.
She passed away because therewas not enough donors, not much
(18:43):
awareness and education in thecommunity.
So I felt that what I reallywanted to do was to recruit more
donors so the doctors wouldhave the tools to save more
lives.
And with that, that's where Iapplied to go to New York
Medical College and got mymaster's degree in public health
(19:04):
York Medical College.
And got my master's degree inpublic health because my desire
was to work in the community toreally create more awareness,
education and increase thediversity and the number of
donors in the registry, becausethat was the reason that my
sister passed away.
Jamie (19:20):
And so could you tell us a little bit about the progress
that was made, not just by yourfoundation but just in general,
as that donor pool grew and grewover that time?
Airam (19:32):
Yeah.
So after I joined theorganization in 2001, we worked
together, my father and I, togrow the organization to become
the largest recruitment centerin the United States.
We are adding the largestnumbers of donors in the country
.
We expanded through all thestates.
Now we start with Boston, newJersey, florida, california,
(19:54):
texas and Puerto Rico,especially in cities that were
very diverse, because diversemakes a player big role, as I
mentioned before.
Because diverse makes a play abig role, as I mentioned before
and then, and of course throughthe efforts of Be the Match and
all the other registry, thenumber of donors grew and the
chances of patients to find amatch continue to improve.
(20:18):
But also through advances inmedicine and other types of
transplants and medications,patients now have a much greater
chance not only of finding amatch but also, if my sister was
here today, she could receive abone marrow transplant from my
mother or my father, becausenowadays it doesn't have to be
(20:38):
100% match Through the advancesin medicine and as well as the
medications that are out there,there are so many different
treatments that she could havereceived that treatment and with
hopes of being cured.
So we have many patients nowthat we have been working for
over 10 years that recently asrecently as two years ago and
(21:02):
last year they now have beenreceiving a transplant from
their parents and they are doingreally well.
So that's fantastic that theadvances in medicine and that
continue the diversity of theregistry.
However, not every patient hasa parent or a sibling or someone
who could donate.
(21:22):
That is within the age limit todonate as well, so that's why
there's still a need for peopleto become bone marrow donors.
Jamie (21:31):
Yep.
So what was it that changed?
Do you know, it's probablyhighly technical, so I don't
want to put you on the spot, butwhat was it that changed where
you don't need to be a perfectmatch anymore?
Airam (21:46):
Well, what you're really doing with a bone marrow
transplant is that you'redestroying the bone marrow of
the patient and you're findingsomeone who's genetically
matched it's called HLA humanleukocyte antigen that they will
be receiving those cells fromthe donor and the body has to
say, oh, those are my cells.
(22:06):
This is not an infection,that's not a bacteria that we
reject.
So now, through medicine.
Of course it's much morecomplex than I'm going to
explain, but the doctors areable to do a few things.
One first they are able toselect only the cells that are a
match.
So they remove the cells thatare not a match, but also they
(22:27):
are medicine.
That medication that avoidsthat.
Jamie (22:30):
That rejection will help boost this immune system of the
patient, and with the new bonemarrow, it helps rebuild the
immune system of the patientokay, so, yeah, so they have the
technology to actually go intothe bone marrow and remove the
stuff that would get rejectedand keep the stuff that wouldn't
(22:52):
.
That's amazing, okay.
So then, with that developmentthen your foundation then began
to shift because, although yousaid recruiting donors is still
paramount, it's not as criticalas it was.
So then your foundation beginsto get involved in other things.
Airam (23:13):
Definitely 2021, of course, right after COVID, and
COVID made all of us have towork to make sure that we are
able to recruit donors online,as many things out there and
being able to reach a verydifferent audience because we
could not be at college campuseswas a big change for us.
(23:35):
Also, it's very important thatwe get young donors.
The younger the donor is, thebetter outcomes are for patients
.
The donor is, the betteroutcomes are for patients.
So with COVID, we could not beout there at corporations,
especially campus known ascampus.
So we, the National Register,really developed the ability for
people to join online bysending a swab kit by mail and
(23:59):
mail back.
But also the need for donorswas not as great to be out there
in the community.
There are other reasons, suchas when a donor join online,
they are more committed, becausewhen a person donates through
the swab kit to join theregistry, it's just providing
that bone marrow type.
(24:19):
They are not donating yet andthat person might be called only
10, 15, 20 years later.
So we learned that by joiningonline they have to wait until
the SWAT kids come back, comehome.
They have to do it, they haveto send back.
So the commitment of the donor,which is very critical, was
much higher.
So there were some changeswhere the National Register
(24:39):
decided to focus a lot online inspecific groups.
There was a decrease in age.
At the time we used to recruitdonors between 18 and 60 years
old.
Now it's between 18 and 35years old to be able to join the
registry.
So with that change into 2021,the organization is no longer in
(25:03):
partnership with Be the Matchto recruit donors.
But we learned that manypatients now were able to find a
match and many patients canreceive a transplant.
But there were other barriersto a number of patients and
those barriers were financialbarriers.
We see that a single mom withtwo kids and one is diagnosed
(25:25):
with leukemia or a disease thatrequire bone marrow transplant,
or the mom is diagnosed with acondition she has to stop
working and when she stoppedworking, with a child in the
hospital being treated for bonemarrow transplant, she still
have rent to pay, she still havethe transportation, no meals,
no expenses.
So we found that many patientshad that barrier, even though
(25:48):
they had a donor, they had atransplant center, they have the
best doctors to treat them, butthe barrier is that they could
not move on with transplant.
Our patient needs to make surethat they have a clean, safe
home to return after a bonemarrow transplant, because in a
bone marrow transplant, becausein the bone marrow transplant
they are destroying the entireimmune system of the patient.
(26:08):
So we have to make sure thatthe rent's being paid, because
many patients we receive todaythe parents have to stop working
.
They ended up with an evictionletter and some of them become
homeless because they cannotafford.
So the foundation today weraise funds to make sure that we
(26:29):
provide the financialassistance to the patients.
We have partnered with 240social workers throughout the
country, 140 hospitals, thatwhen they identify a patient or
family who are about to receivea transplant, a patient or
family who are about to receivea transplant but are faced with
some financial barriers,out-of-pocket expenses that are
not covered by insurance, theyapply and reach out to us for us
(26:53):
to provide that support so thatthere is no barrier to
transplant, so they can continueand schedule that transplant
date.
Jamie (27:00):
Yeah, that's great Because I mean, there's so much
to think of around the entiresituation.
So a lot of times you start offwith like the medical model of
looking at a disease so there'ssomething wrong, let's fix it.
But then one sort of ringaround that is financial, and
you said you know your familyhad to sell everything, move um,
(27:24):
and and you're?
You're talking about peoplethat might not have the money to
pay rent.
They don't have the money tostop working, um.
And in another conversation yousaid that um, I believe you
said the number one reason forpeople declaring bankruptcy is
cancer yeah, yeah, medicaltreatment.
Airam (27:43):
There are some conditions that someone, such as cancer.
It's one of them that getdiagnosed with cancer that you
know the expenses are so highthey're not able to work and
ended up filing bankruptcy.
Not only that, a number ofpatients, do you know, ended up
not receiving the treatmentbecause they could not afford.
Or they do not take themedications because they could
(28:03):
not afford, or they do not takethe medications that they have
needed and required fortreatment because they cannot
afford.
So the financial stress ofpatients facing cancer is
tremendous.
Carlos (28:15):
You were kind of hitting on some of this, but can you
perhaps maybe frame up like itbegan with you know, your sister
, one patient, one case, andmaybe a look at the numbers of
where it's grown to you know,today, now the organization is
(28:37):
in so many locations you know somany parts around the world,
has helped, how many patientshas raised that Maybe you can
give us a good sense of that forus.
Airam (28:47):
Yeah.
So the first years of thefoundation, our main goal was to
recruit donors right,especially diverse donors, and
through that work we were ableto provide recruit donors that
donated to 1,000 patients.
So 1,000 patients received abone marrow transplant from
donors that we have recruited.
Once we start providingfinancial assistance to patients
(29:11):
last year was the first year ofour program that we call ECLA
Cares we provide financialassistance up to $1,000 to 240
families this year.
Last week we surpassed 710families and patients that
received this $1,000, up to$1,000 in financial assistance
(29:33):
and those patients there aresome criteria.
One of the criteria is thatthey have to be 400% of the
national poverty level, sothere's a low socioeconomic
status who really struggle to beable to receive the treatment
because they cannot afford theeveryday expenses in the parking
(29:54):
transportation.
But we received over 1,400applications and that number
continues to grow.
One thing that is important isthat our organization is focused
on patients who are receiving abone marrow transplant,
regardless of their diagnosis.
As you probably know a lot offoundations they provide support
(30:17):
for patients that aredisease-specific Leukemia and
Informed Society is an example.
They are specific disease thatneeds to qualify for them to
receive support.
In many other organizations, wefelt that we need to find where
is the gap.
We do not want to replicate theword of all those wonderful
organizations out there.
(30:38):
And when we said regardless ofdiagnosis, we found that
patients, for example, withsickle cell, there's not much
where they can turn to forfinancial assistance.
So we are one of the feworganizations that are providing
this financial assistance forpatients receiving a bone marrow
transplant that cannot turnsomeplace else.
So we are experiencing a hugegrowth, as I shared with you,
(31:02):
from 240 to over 700 patients,and next year it will be a much
higher number.
But of course, fundraisingdoesn't grow as much as they
need.
So the need is great and that'swhy we need to continue to
request support from everyone sowe can provide the support for
those patients.
Jamie (31:20):
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 moneythat is self-sustaining.
Your foundation has a littlebit of that or none of that, but
you do fundraising and you askfor not only you know people
(31:42):
like bone marrow donations, butfinancial donations.
Airam (31:47):
Yeah, so there are a lot of private foundations or family
foundations, that many of themprobably you know, the Bill
Gates and the Alinda Foundationcomes from wealthy families not
the case of my family.
So we are a community-basedfoundation.
We rely on donations fromindividuals mostly, but also
from corporations and otherfoundations that we apply for
(32:08):
grants to raise funds so that wecan support those patients and
families.
Jamie (32:16):
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 youknow, in another conversation
that we had, you said that youdo find yourself providing some
of that.
You know emotional resilienceand even grief, support and
(32:39):
things like that, and a lot oftimes that goes overlooked as
well, right, so like everyone'salways focused on the medical
model, so much that thefinancial piece of it and then
the emotional piece of itsometimes doesn't get
acknowledged, but you're alsoproviding that.
Can you tell us a bit moreabout that?
Airam (32:58):
Definitely we.
Also, although we are a verysmall organization we are
Stafford three.
Now we have this personalcontact with every patient that
reach out to us.
I personally, being a patientfamily, 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 schooland my parents were not there,
(33:20):
you know, for lunch, you knowfor anything, my brother and I,
you know, had to figure it out.
So we know that cancer can bevery lonely.
So as we talk to families andwe interview them when we
provide this support, some ofthem saying that, yes, the
financial support is amazing,but just know that someone care
(33:42):
for them.
It means a lot for them.
Many times they don't know whatto do, who to talk to, and many
families reach out to us.
A single mom of twins that bothneed a bone marrow transplant
was in despair, had no idea whatto do.
They received a transplant andthey relapsed.
(34:02):
They need a second transplant.
She had already decided thatshe's not going to move forward,
she's not going to do a secondtransplant, because she could
not deal with this again.
It was not until she learnedabout us.
We provide financial assistancefor her, rent, for
transportation, but we kept intouch with her and encouraging
her that you know everything'sgoing to be okay, that she'll
(34:25):
find the resources, that herkids were going to receive the
transplant and do fine and theyare doing amazing and she
decided to go on.
Sometimes she calls justbecause she had bad news and she
did not know anyone to sharethose news, even though she had
family and friends, was notsomeone that went through this,
that understands what's going on.
(34:46):
So it's more about not onlymyself, but myself and our team
members that are always there tolend a ear, for them to share
with us what their thoughts andconcerns are.
We also are always looking forother resources for them to
expand what we do, alwayslooking for other resources now
(35:07):
for them to expand what we do.
Jamie (35:16):
Yeah, so then do you stay in touch with the families?
Airam (35:17):
then also, as they go through the process and continue
on?
Yes, definitely, and we know howimportant it is for someone
who's starting that treatment toreceive a bone marrow
transplant to hear from others.
So we do host luncheons in manydifferent parts of the country
called now many times called Mixand Match for patients.
So we invite patients who havereceived the treatment and they
are finding a cure, maybe five,10 years now.
(35:40):
We invite current patients whoare receiving treatment and
those who are starting thetreatment to receive a bone
marrow transplant and we askthem to share their story.
It's a patient luncheon that weconnect them so they provide
more of a support for each otherand they see that they're not
alone.
They can see that others wentthrough this.
They also have financialchallenges and difficulties.
(36:01):
They have fear, as they have,and they get to connect and get
to know each other because weknow exactly how lonely it was
back then and we always reflectback and you know, as a young,
12 years old, 13 years old, buteven for adults, and we have
seen the response from that andmake sure in connecting people
because we are very small, butif we connect everyone and form
(36:24):
a community of people receivingbone marrow transplant.
We can definitely empower thosepatients to go through such a
difficult challenge in theirlives.
Carlos (36:35):
So if you were to look at kind of the next chapter of
the organization, the foundation, can you maybe lay out that
vision?
Airam (36:46):
Yes, I mean we know the need is great.
Of course, the expenses ofpatients going through a
treatment is huge.
So we definitely need to pursue, raise more funds, create more
partnerships and, as we continueto hear that, you know bone
marrow transplant continues toincrease, the more and more
(37:08):
disease are treatable throughbone marrow transplant, we need
to continue to provide thatsupport.
So when we have not reached allthe hospitals or social workers
or places where we can connectwith patients, so that number
continues to increase.
For you to have an idea, thereare about 20,000 bone marrow
(37:29):
transplants per year in the USand there's a long way to go.
So we provide $1,000, not tominimize what we do.
But someone who needs help withrent, especially with places
like New York City, chicago,California, it helps.
It helps them avoid thateviction, but the expenses are
(37:52):
so much greater.
Or when they need to relocate,someone who lives upstate New
York needs to come down to NewYork City for treatment with the
family.
So the financial need is muchgreater than we can actually
provide at the moment.
So our vision is that we aregoing to be side-by-side with
the patients, raise as muchfunds as possible, provide as
(38:13):
much logistical, emotional andfinancial support as we can.
Jamie (38:18):
Yeah, so are there?
I'm sure you have like, yourfrustrations with, like, our
healthcare system, right, andyou probably have an opinion
about the fact that a foundationlike yours is even necessary
like, from the financialstandpoint, any kind of
roadblocks or anything that youwould just sort of add to, I
(38:40):
guess, probably what we alreadyknow about the healthcare system
.
Airam (38:45):
Yeah, I mean I think that it's great that an insurance is
paying millions of dollars overtreatment, but sometimes it's
being able to hire a caregiverthat the insurance does not
cover, that a transplant isbeing postponed, and when we
come in and say you can hire acaregiver, which is required
(39:06):
24-hour caregiver for thepatient to receive that
transplant.
So it's difficult to understandand know how that works.
And now, of course, I'm not anexpert on how insurance could.
Some insurance are starting toprovide more assistance than
out-of-pocket expenses but it'ssomething that it needs to be
looked upon, especially from thehuman level.
(39:29):
You know cancer affects theentire family, not only that
individual.
It's not only the treatment youknow there are so many other
things that are affected butdefinitely something that needs
to be looked at.
Only the treatment you knowthere are so many other things
that are affected.
So, but definitely somethingthat needs to be looked at and
you know, and it's as you, asyou mentioned, it's it's complex
, so to be able to provide allthe support that is needed.
Jamie (39:50):
Yep, and you know you, you mentioned that a person
would need to be at a certainlike poverty level, right, and
so I think that brings up thenotion, you know, that things
are not really equal and there's, you know, disproportion.
So it's great that you'rehelping that group of people,
(40:10):
and I think we see statisticsthat certain groups of people
get affected more by disease orby trying to get the treatment
to that disease.
So is there anything more youcould add?
You could add to that piece ofthe puzzle.
Airam (40:23):
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 patientsare from ethnic diverse
background, mostly Hispanic,african-american, asian and,
like sickle cell affects, mostlyafrican-american.
And many times now thetreatment is there, the donor is
(40:45):
there like that's what mysister 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 forall um especially for those
communities that you know theyit's.
It's it's because of who theyare that is affecting.
They might even lose theirlives.
Carlos (41:07):
Is there a partnership that you're doing with another
organization, kind of going tothe needed families together?
Airam (41:17):
Yeah, so we have identified all the organizations
that provide all the kind ofsupport, all supports that we
provide as well, because, like Isaid, sometimes the $1,000 is
not enough, so we always referthem to others and they get some
from us Although ours is at ahigher level than many other
organizations in terms of theirdollar per patient but when we
(41:41):
add the different organizations,they do get all the support or
a good portion of the supportthat is needed.
So we're always looking toshare the need with other
organizations and to provide thebest resources for the patient.
Jamie (41:57):
Yeah, so is there anything that you would say to
you know a parent whose child isgoing 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 bonemarrow?
Airam (42:14):
Yes, the main thing is, like you know I remember my
father always mentioned that youknow, the first step is to get
her treatment and cure her, nomatter how much it was going to
cost.
And then we worry about howit's going to cost my brother
and myself.
We pay for the rest of ourlives that treatment.
(42:34):
I think there is hope and thereis support out there.
I think there is hope and thereis support out there and I
think that many families need toadvocate for themselves and ask
, you know, ask questions, askfor resources, because I know
those who really look for it andgo out there.
You know they are able toidentify.
(43:03):
You know, sometimes, althoughit's very difficult, you know,
going through a cancer treatment, seeing the ones suffering the
time that they have to take offout from work, you know
sometimes they don't feel thereis much hope out there.
But I see that, as the familiesreally advocate for their loved
ones or for themselves, youknow they do find a way.
They are good people out there,they are good organizations out
there and the most importantthing is that you know is to
keep hope, faith that thingswill go well, that they'll do
(43:23):
their best, and you know not toalthough it's difficult to say
that not to give up.
You know that there are a lotof people that are out there to
be able to support and, you know, for those who have faith, know
that god watching over us willdefinitely, you know, get them
to to a better place yeah, Ithink it's just you know one
(43:48):
thing that that comes out of.
Jamie (43:50):
What's wonderful about this is you know your sister's
life, what she wanted, that notethat you know from that so much
was born and so many lives wereaffected and improved.
You know so I think that'sthat's really powerful.
So you, your family, must feel,you know, pretty proud about
that.
Carlos (44:11):
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 thisfoundation, kind of this, you
know, which you're leading today.
Airam (44:30):
Yes, and now that I am also a dad of two, you know I
understand more what a fatherwould do.
I understand more what a fatherwould 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 ourkids as well.
(44:50):
So I do encourage those whohave not joined the registry yet
or not supporting thoseorganizations.
You know, if I ever need a bonemarrow transplant, I'm much
more confident now, with aregistry of over $32 million
worldwide, that all theregistries are connected.
I have a much better chance.
So, but there's still patientswho cannot find a match right
(45:13):
and it's providing support tothe organization and many other
organizations that you know wehave to always think about
others because it can affect us.
We never thought that we haveto leave that beautiful beach in
Brazil with our family andfriends, you know, to be able to
deal with this.
So definitely a lesson learned,and I know that you know even
(45:36):
today.
You know I was much younger.
Learn, and I know that you knoweven today.
You know I was much younger.
But 32 years later, I see thatmy 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 Iget here.
We thank you for that supportthat allowed me to receive my
transplant and many patientscelebrating that they are
healthy and alive.
(45:57):
Today, many patients celebratingthat they are healthy and alive
today, so it's very encouragingand I think that you know
there's nothing else that Iwould like to be doing than this
work today.
Jamie (46:13):
That's great, Airam, thank you very much for joining
us.
It was really enlightening andvery touching to hear the story
and the history and just it's soimpressive and very touching to
hear the story and the historyand just it's so impressive
everything your organization isdoing, from the financial
support to the emotional support, the community support, and
that's growing and growing andit's just really impressive.
And I want to thank you forspeaking with us today.
Airam (46:34):
No, I thank you both, because the only way we are able
to do this today is because ofthe support of individuals like
you, who are sharing their storyand encourage people not only
to support the organization butbecome bone marrow donors as
well, and the support of all thecommunity and all the patients
who are sharing their story, sothat we all can come together
(46:55):
for the benefit of one.
Jamie (46:57):
And what is the website that people can go to?
Airam (47:01):
It's www.
icla.
org, so icla.
org.
Great, okay, well, thanks again, and any support, no matter
what size of donation, it willmake a big difference.
(47:21):
Just imagine it can be a lunchfor a parent who is in the
hospital with $10 a month.
We have monthly donations, orit can be $10 million each in
the backs of any family.
So thank you.
Jamie (47:34):
Yeah, Okay, Thanks everybody for joining us today.
Airam (47:37):
Thank you.
Jamie (47:38):
See you next time.
Airam (47:40):
Bye-bye, take care.
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