I was involved in a conference where we
had, Meghan from Nigeria, but she talked about
how she had to carry her son for
two miles on her back. And this wasn't
an infant, this was like a teenager
because he couldn't walk. And that's really sparked
me and the fact that we could really
all come together. We're one global bleeding disorders
family.
Welcome to Boundless Bee, the Hemophilia Bee Podcast,
the podcast standing with you from a family
like yours, presented by the Coalition for Hemophilia
Bee and in partnership with Balancing Life's Issues.
Today, we're joined by Debbie de la Riva
and Cindy Komar from Save One Life, a
powerful organization bringing hope, dignity, and direct support
to people with bleeding disorders in underserved countries
around the world. From scholarships and enterprise,
grants to vital medication and mentorship,
Save One Life is creating change that doesn't
stop at treatment and empowers futures.
Thank you so much for being here with
us. Debbie, do you want to kick it
off and just kind of explain who you
are and your role within this organization?
Definitely. Because Cindy Comer, I'm the,
I'm the ambassador
program coordinator
Mhmm. For for Save On Life.
And Cindy, you might wanna introduce yourself
as the big cheese.
Sure. Thanks so much for having us today.
I appreciate it. My name is Cindy Comer.
I'm the executive director at Save One Life.
I got involved,
gosh, about six, seven years ago.
But I have been a fan of Save
One Life since my son with hemophilia was
born twenty two years ago.
Gotcha. So I guess talk to us about
the Save One Life organization,
its founding, and, you know, kind of where
it's at today.
Save One Life was started in 2001 by
Laurie Kelly, and Laurie was asked to go
to Dominican Republic to talk about leadership and
advocacy. And that's when she first experienced
the issues with regard to developing countries that
there's no treatment,
that people, with hemophilia are living a life
of severe pain, crippled inability to really work,
really in systemic poverty.
And so that's when she started thinking we
have to do something. We have to help.
And so she started, first Project Share, which
is part of Save One Life. And project
share is a humanitarian
aid providing donated factor,
donated medication
to those in need in developing countries because
they had no medication, and those are from
donations in The United States.
And then through the course of, doing further
training, she went to Pakistan. And in Pakistan
is when she encountered,
again, the same situation, different country, but developing
countries have very similar issues in terms of
no treatment, no access to treatment,
difficulty to get education, living in and just
crushing poverty. And so
in, Pakistan, she met a father who said,
if I could just have $20 a month,
I would be able to send my child
to get an education
to get out of the systemic poverty.
Because, basically, if you don't have an education,
you are forced into manual labor, and that's
what you can do. But because you have
hemophilia
and you haven't had any treatment, you're crippled
and having difficulty
being able to do any kind of manual
labor. Should that put you in this cycle
you can't get out of? So by being
able to provide an opportunity to get education,
it was a way to kind of get
out of that poverty. And so with that,
Laurie Kelly said, let's let's do something. Let's
start this. And so she started Save One
Life. Wow. So that that was kind of
the spark of its creation.
Before I pass it over to you, Debbie,
I guess, Cindy, maybe just kind of tell
us where we're at today
in terms of the landscape and and, like,
kind of the work Save One Life has
been able to do.
Today, Save One Life has over 2,500,
individuals that has been helped to really create
a better life for themselves and their family.
We've worked in 18 different countries and really
provided that assistance. So we hear stories all
the time from them, and we really it
just warms our heart to hear those stories
that, Sable Life has made a difference. So
many of the kids started in our sponsorship
program, which is where we provide sponsorships to
children, one on one sponsorships
to help them directly. So we provide direct
financial assistance
through our program partner, which is a local
chapter to that family, to that individual. So
if someone donates, they actually the money goes
directly to that, person, that child. Mhmm. And
so,
a lot of those have gone through that
sponsorship program and then gone through our scholarship
program where as young adults have been able
to continue their education
and to really, like I mentioned, get out
of that cycle of poverty by being educated
and be able to get good jobs. And
that's a scholarship program that we do. And
then we also do grants for families, a
lot of single moms trying to create new
businesses and and start. So really we've seen,
Save One Life is that twenty fifth anniversary
in 2026.
So we've seen Wow.
A lot of changes over the years, and
I'll we're very excited to,
all that has happened for those individuals that
we've supported and, really, all of you have
supported in making this happen. Yeah. Yeah. And
I didn't wanna,
brush over. You did mention earlier in the
podcast that you have a son of hemophilia.
Can you tell us about them?
Sure. I have a son. His name is
Cade, and he is 22 years old, and
he was born with severe hemophilia
a. And, yeah, he's doing great. He's in
college and, finishing up, but it was a
you know, as as most people, it was
a very scary start to his life with
that journey and trying to figure out how
to get him the treatment and what he
needs. And I will say that I went
to, Laurie I heard Laurie Kelly speak when
my son was an infant, and it it
really gave me hope that, oh my gosh,
we do have access to this medication.
He's going to be okay. We're just gonna
work through this. And really
seeing people in other countries not so fortunate
really resonated with me and made me feel
like, alright. You know, we can make this
work. And my son's been able to really
been very fortunate to live on, really a
life where he's been able to do a
lot of things.
Yeah. And I think it's also a reminder
of how the Coalition of Hemophilia be, the
work we do has has ripple effects. Right?
Absolutely. Absolutely. I think it gives people hope
and makes people feel like they're capable
and that this does not defines who it
does not define who you are. It's just
a part of who you are. And I
think that's a very
important delineation.
Yeah. Debbie, I was gonna throw it over
to you now because there's if we just
got the macro view, right,
tell us tell us about the program work
you do globally.
Definitely.
First, I'd like to concur with with Cindy.
That's when,
you know, I received the news too by
listening to Lori Kelly and seeing the horrific
pictures
of of children,
you know, with just cantaloupe
with enlarged joints
and and just excessive bleeding.
And I too like Cindy has a have
a son who's now 31 with severe hemophilia.
And I couldn't imagine what that would be
like, the helplessness a parent would feel
not being able to help them. And so
that's when I got involved too. I've been
sponsoring three children for the past ten years.
And then to bring you up to date,
what I get to do now for a
living is to identify
people around the country
that feel just as passionate
about making a significant change in somebody's life.
And so, we have a program that's called
the ambassador program.
And just as of last month at the,
bleeding disorder conference, you know, we train six
ambassadors that are now gonna go out and
tell the stories
and get people involved passionately.
And and and equally important, to help people
understand how they can help. Because I I
think, Kai, that's the biggest problem. Mhmm.
People
can see this term that only twenty five
percent of the people in the world
receive adequate factor,
and they could know well. We've identified about
four hundred thousand, so that's about three hundred
thousand people who are living day to day
without the medication that that they need. Mhmm.
And so number one is with the awareness
of really what the situation is through storytelling,
bring it to life, and then letting people
know you can you can help by sponsoring
a child Yeah. For $35 a month. Wow.
That Yeah. Yeah. I don't know. Tell tell
us more about this sponsorship program.
Certainly.
Through their sponsorships, and like Cindy said, we've
we've sponsored over 2,500
children, you know, throughout the life of this
organization.
And what it does, it really does help
pay for those extra expenses,
that would get involved with somebody's ability to
even get to a hemophilia treatment center.
Sometimes they have to travel
for for hours,
with inadequate
transportation.
And so or sometimes it's to help them
go to school with with school supplies.
And, that that $35
makes a difference
between having, you know, a life
that,
is more manageable. It improves the quality of
life.
Yeah. And I guess for from your guys'
perspective, like, why does that it's like direct
approach. Right? Like, one to one. Why does
that matter so much? Is it does that
make your organization unique in that sense? Yes.
I would say it does make our organization
unique because
we provide
through all the donations
directly. So you can go on the website
and actually choose a child, and that's the
child you are are definitely connected to. Mhmm.
And then the funds go through that program
partner. I mentioned that local chapter directly to
that child and family.
So you know what you're donating is making
a a direct impact to those families. You
know, when Laurie Kelly started the organization,
she picked the name Save One Life from,
Schindler's List because,
in there, he had said, if you save
one life, you save the world and really
wanted to focus on one child at a
time. And that's how Save One Life, the
name was born from that.
Wonderful. Wonderful. And and, yeah, I guess, you
know,
the education piece, right, is so important, like,
just making people more aware
of of of what they're living with or
or making people aware of what others are
living with. Right? I'm not somebody who has
hemophilia or is connected to someone who has
it, but I'm now connected to all of
you, right, through through this beautiful organization. And
I think maybe are there any stories that
are leaping out of of
maybe a child or a family who who
has had a positive impact via Save One
Life? I can tell you a story that
I just shared yesterday, actually, with the staff.
We heard from a young gentleman in India
who wanted to share with us that he
just got his accounting degree
and that he,
you know, he has severe hemophilia.
He was in our sponsorship program
and then his scholarship program to be able
to get the education. And now he's actually
working at the chapter in India
to help with Save One Life, to help
those.
So he said, I'm doing this because I
want to return all the assistance and help
that I got. But we see this time
and time again,
you know, individuals who started in our sponsorship
program and able to really better their lives.
Now they're able to get those degrees, which
help them to lead more productive lives despite
the fact that they've had multiple bleeds, no
medication when they were young and all those
complications that come with that. Yeah.
And then another story about Project Cheryl, just
to mention is we had a a young
mother whose son had a brain bleed and,
didn't know what it was because a lot
of times you don't have
local hematologists
that understand hemophilia at all. And so really,
he was he was not doing well.
And finally, she connected with the local chapter
who connected through us to donate medication.
And because of the donated medication,
they were able to give that to him.
And now he's, you know, seven years old
and and doing very well and,
able to just, you know, go to school
and do the the same things that we,
try to do in this country. So I
think that project Share made a huge difference,
I think, really truly between life and death.
Mhmm.
And then one other short story I'll share
as a gentleman,
we had in Fiji, there's no medication there,
and we were able to get medication to
him as well.
And then a fourth one on the the,
the grants I'll mention is one of our
program partners, mentioned to us that a young
mother,
we had provided assistance by
providing
computer equipment for her to do a business.
She was in a very remote area and,
our program partner went to visit her a
year and a half later and it's like
a night and day. The woman was shy
and sort of very seemed very
insecure and and didn't talk much at the
first encounter. And the second one, she was
running the business, doing very well. She had
a lot of self confidence. And so it's
not just the financial component. It's really helping
them feel like a more fulfilled life, more
self confidence, feel like someone cares about them,
someone really believed in them, and I think
that's really significant as well.
And one other thing I'll mention is we
have a lot of, single moms because in
a lot of these countries, the husbands may
leave because they feel like
the child is cursed or the mom is
cursed. Mhmm. The women are ostracized from the
community because they're viewed as cursed. And so
it's these women are left to try to
raise children on their own without really any
support and help. So being able to provide
these grants is really life changing for them
to provide for their family. And then obviously,
in conjunction with that, the sponsorship program allowing
the child to also thrive and be able
to get out of that systemic poverty. You
know, there's a few things I heard in
there. There's this idea of community, not only
helping you financially or just pragmatically with medication.
Right? But it's that confidence. It's that ability
that the mental health aspect of this, right,
which is such a huge piece of to
navigate whether you're the mother who's scared because
they have the child or you're a friend
or if you have it yourself.
We know in the coalition, like, there's a
so much talk about
the mental health component
of living with or have or living with
someone who has this. Right? So just the
the support, that net, like, just having that
net there
is providing so much relief beyond just, you
know, medication and and financial. So it's just
it's wonderful to hear. And I think the
other piece I was hearing is when when
you give back. Right? So I've received, and
now I'm giving back. And I think that's
really the coalition,
like,
help our members give. But then let's talk
about that advocacy piece because
there are gonna be a lot of changes
coming over the next couple years, and as
things will probably get more difficult for a
lot of people. So now is the time
to come together as a community. And I
guess maybe, Debbie, start with you. Just talk
to us about advocacy, and
maybe there's a different word, but the stigma
behind it and what was the fire
that led you down this path that maybe
a parent out there could hear and be
like, hey. May maybe a small step in
that direction could have a huge impact.
Oh, absolutely.
I mean, whenever
you're acting in an altruistic way, it is
such a win win mindset because the person
in The United States
can deal with their own feelings of we
all sometimes feel overwhelmed
by living with this condition and and feel
helpless
to affect any type of change. And so
for the person giving from The United States,
from anyone listening from the coalition b,
you have a direct avenue
to to feel more
empowered I mean, feel more powerful
by empowering someone
Mhmm. In somewhere else in The United States.
And then that particular person
now feels heard and seen.
Mhmm. And it's just a cumulative effect like
you talked about the other you know, you
talked about recently. Mhmm. And so it's it's
the importance of, being there for other people.
And as you said,
right now,
we get to have an avenue to change
somebody's life
and help us. It's the thing that we
have control over.
It's how we spend our time, money, and
resources.
Mhmm. So advocacy is definitely a win win
for both people. Yeah. Debbie, is there anything
or sorry. Cindy, is there anything you'd like
to add to that? I think, Debbie, that
was very well said. You know, kind of
to share how I got involved and what
was a spark for me is I actually,
I heard Laurie speak that I mentioned already.
But,
I was involved in a conference where we
had, Megan from Nigeria come, and this is
when I was working at the Arizona Hemophilia
Association doing something different, but she talked about
how she had to carry her son for
two miles on her back. And this wasn't
an infant. This was like a teenager
because he couldn't walk. And that's really sparked
me and the fact that we could
really all come together. We're one global bleeding
disorders family,
and I feel like we can't help everyone,
but we can help our own brother, you
know, blood brothers and blood sisters.
And so I like to Debbie's point, I
think it that altruism makes you feel like
I can do something about this. I can
help someone help themselves.
And I think that's powerful for us, and
I think it's powerful for them. And in
this world of uncertainty, I think that that
is certain. I think that the funds that
you provide and the assistance you provide to
support those individuals
that really need it within our bleeding disorders
family, I do make a huge difference for
them. Yeah. Yeah. Well, it's, you know, it's
an incredible
vision, and, obviously, you guys are having such
a huge impact on so many people. So
I guess talk to us about what's coming
up next. Like, what's giving you hope, in
in the foundation and other new initiatives? Like,
just talk to us a little bit about
the future. Well, Debbie, if you wanna start
with the ambassador program that you kind of
mentioned already, but that's something new, and we're
really excited about it because it allows us
to spread our, you know, message even further.
So, Debbie, do you want to touch on
that again? Oh, definitely. So there's a there's
so much excitement because there's some synergy now.
And and now we have we have the
stories of
strife and success,
and now we, you know,
empowered other individuals to go
and, you know, just
just tell the stories and tell people specifically
how they can help.
It's just, I can see it's just gonna
get it's gonna grow and grow, and pretty
soon we're gonna have so many people
not just going to bleeding disorder conferences, which
is extremely important,
to reach out to our community.
So as Cindy said that they can
they can reach out and figure out how
to work, how to help their global
family members.
But then but everybody has a circle of
influence too. And so these individuals will talk
to
people where they work or organizations they belong
to. Mhmm. And so I I can see
that this is going to mushroom
into
a real sustainable system.
Yeah. And so we can always know that,
you know, the ideas are gonna be spread.
Yeah. And people figure out how to help.
That's great. Well, I guess, tell our listeners
where where where can they get in touch
with you? Like, website or go through that
with us.
Sure. They can get in touch with us
by going to save1life.net,
to our website, and just learn more about
the different programs we provide and and how
they wanna get involved. We also have committees.
I mentioned the grants, and I mentioned the
scholarships. We have a committee that decides, you
know, they have to apply for those scholarships
and for those grants. And then we have
a committee that decides if they're approved or
not, and I think that's a really interesting
way to get involved and and learn more
about what's going on globally. And then also,
to like we mentioned, the $35 a month
sponsorship,
if you wanna get involved in the ambassador
program. And next year's our twenty fifth anniversary,
so we're really excited, and we're looking, forward
to doing a couple of celebrations next year
and excited to share those with you once
we have those all planned. Yeah. So please,
come down the website and learn more about
the organization.
What I would add is this, is that,
Save One Life is really providing an opportunity
for us to be good humans,
for us to take the time to notice
somebody around the world that's experiencing strife. Mhmm.
To go back to something you asked me
earlier, what are some other stories?
Well, at at, the MBDC, I got to
stand with a woman
who was very much into her strife knowing
that she's hearing about all of these wonderful
medications,
but yet, you know, feeling the burden that
she's not gonna be able to bring this
home to her son. And just by having
a ten minute conversation with her where she
felt seen
seen and heard,
I could see that the hope in her
eyes
that,
you know, somebody does care about me and
somebody's gonna do
something to make a difference.
Yeah. Well, beautifully said. And thank you so
much to you, Debbie and Cindy, for sharing
your time and your stories today. You know,
at the at the Coalition for Humophobia, we
know that community doesn't stop at the state
or, you know, country borders. This is a
global thing. And the work you guys are
just doing the work you are doing is
just wonderful. So just a powerful reminder that
no act of compassion is ever too small
and that together, we're all changing lives. Again,
go to save1life.net
to connect to this organization.
And thank you again for your time, Cindy.
Thank you for having me. And thank you
so much for being here, Debbie.
It's been a pleasure. Thank you. Alright. This
has been Boundless Bee, the hemophilia b podcast,
the podcast standing with you from a family
like yours presented by the Coalition for Hemophilia
b in a partnership with Balancing Life's Issues.
Until next time, everybody. Take care.
Thank you for listening to Boundless Bee, the
Hemophilia Bee Podcast, the podcast standing with you
from a family like yours, presented by the
Coalition for Hemophilia B and in partnership with
Balancing Life's Issues. Produced by me, Kai. Got
an idea for the show? Send us an
email at podcast@hemob.org,
and don't forget to stay connected to your
community at hemo b dot org. Anything else
to add, Miles?