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.
The Coalition for Hemophilia Bee is more than
an organization. It's a national nonprofit
serving this community now in its thirty fifth
year. Beyond that, it's a family, a family
built on shared experiences, resilience, and the willingness
to lift each other up. At the heart
of this community are the volunteers,
the ones who dedicate their time, energy, and
passion to making a difference.
This is part two of a two part
series where we are celebrating the incredible individuals
that helped the Coalition for Hemophilia B thrive,
our twenty twenty four volunteers of the year.
In part one, you heard from Colin, Fell,
and Melinda.
And today, you'll hear from the remaining three,
Valerie Schneider, Christopher Maddox, and Rick Starks. And
if you haven't listened to part one, I
encourage you to take a listen after the
completion of this episode so you can hear
the stories of the other three winners.
Valerie's connection to hemophilia B began with her
son, who was diagnosed with severe factor nine
deficiency at birth. Over the years, she has
dedicated herself to supporting not only her family,
but also the wider hemophilia b community, ensuring
that families navigating this journey never feel alone.
Christopher has been part of the coalition since
he was a teenager,
living with hemophilia b and an inhibitor.
Through volunteering, he's found his voice, helping to
advocate for others who are navigating similar challenges
and showing them that they are not alone.
Rick's journey is one of resilience. Diagnosed with
severe hemophilia B at birth, but it wasn't
until his daughter was diagnosed that he truly
stepped into the community. Through his work with
the Coalition and by sharing his expertise in
Tai Chi and movement, he has helped countless
others manage both the mental and physical aspects
of living with hemophilia B. Though their paths
are different, Valerie, Christopher and Rick share one
thing in common. The Coalition for Hemophilia B
changed their lives and now they're making sure
it changes the lives of others.
Every journey begins with a first step, a
moment when someone realizes they want to make
a difference.
For Valerie, that moment was deeply personal. She
was looking for a community that truly understood
her son's diagnosis
and the unique challenges of hemophilia b. Actually,
for the longest time, we didn't have the
ease of connections that we do now, and
it took me a while. I found my
Florida chapter. And at one of those events,
I was introduced to the Coalition for Hemophilia
b. I was so happy because
b is rare.
It's more rare than hemophilia a. So to
find an organization that was specific to what
my son had where I hadn't really ever
met any other, you know, outside my family
with hemophilia b. For Christopher, volunteering was about
amplifying voices, ensuring that no one else with
hemophilia b would feel alone in their struggles.
He wanted to be part of something bigger,
something that could change lives. I wasn't hearing
from other people that are in the same
boat as I am. So maybe I should
try to be a voice for other things
that are going on in our community. So
I just started going to different events, different
things that happening. Yeah. I I guess I
had, like, a bit of a dream connecting
with people just to be connecting with people.
And then I was telling them I had
hemophilia and all that kind of stuff. And
then eventually, I found out there was other
places that had the same group of people
that had the same problem, and now everything
happened.
And for Rick, getting involved with the Coalition
for Hemophilia b was about breaking the silence.
After spending years hiding his diagnosis, he found
a place where he finally belonged and could
give back. There were no camps when I
was growing up. There was really no support
system. You're on your own. That's what I
thought
till my daughter was born.
Before that, I had hid my hemophilia from
everybody. I felt that it was a weakness.
I mean, it held me back a lot
through my life, and I didn't want her
to grow up that way. So I resolved
to open myself up more. That way, maybe
she would open her up into the community
as well. So I found the Coalition for
Hemophilia B. Right off the bat, I went
to a men's retreat with Wayne Cook and
Carl Wexler and a bunch of the other
guys. I just fit right in. For the
first time, I felt like I really fit
in with this group of guys. For many,
volunteering starts as a way to give back,
but what they find is that it transforms
them in a way that they never expected.
Valerie found not just a cause, but a
second family, a network of people who understood
her journey in a way no one else
could.
It's important. It's something that I want to
do. I enjoy it. I like giving back
to the community, making the connections. And, honestly,
all of the people that I've met have
really become family. Christopher's journey was about more
than just lending a hand. It was about
discovering a newfound gratitude
for the support system around him. Seeing the
impact of his efforts gave him even greater
purpose. And so it's a connection from one
step to another. You never know who might
have it or who doesn't have it, who
has a femur, who has a history. Don't
even know that they have it. Being myself
and, just getting involved with the community, that's
the main thing for me. Something that you
love to do and you do it. You
don't worry about anything else. You just spread
your energy, spread your joy, and and then
send it off to everybody else volunteering
and showing that, hey. Life goes on. Even
though we have something going on, you still
make something happen. For Rick, volunteering was proof
that the more you give, the more you
receive. His experience helping others reinforce his belief
that true fulfillment comes from service.
My sharing of anything I can do to
help has always come back to me tenfold.
It's
friends,
the,
the acquaintances that you make. Through the coalition,
I've been allowed to travel throughout the country.
I help host meetings on the road. My
wife and I get to travel and see
the world. So the community has meant a
lot to me. I've never felt like I'm
strain giving because the more you give, the
more you receive.
And it's a constant cycle,
so I never feel like I'm over overtaxed
by anything. What makes Valerie, Christopher, and Rick
stand out isn't just their dedication. It's the
way they bring their unique strengths to the
community.
Rick has used his knowledge and passion for
Tai Chi to help others manage both the
mental and physical challenges of hemophilia b. His
classes have given community members a way to
find balance, relieve stress, and improve mobility. I've
had several people
come up to me. I always know when
I do a program
how well and successful it was because of
the people that wanna talk to me afterwards.
And the ones
that really have meant a lot to me
are the ones that continue to come back
at every session
that I host. They're always there. I can
tell they're getting something out of it. They're
experiencing
something new with every session.
It's a mind body connection, which really should
never have been separated anyway, but that's another
story. Mind body should be one thing, period.
Christopher has an infectious love for life and
an overwhelming positivity that is felt by everyone
he meets. He embodies what it means to
turn adversity into strength and brings joy and
encouragement to the community. I just find that
it's easier to handle with joy and happiness.
You have to throw away you know, when
you have a disability, you have something that's
gonna be a hindrance and do the things
that you love to do. I do all
these different things that, you know, you would
wanna normally do in a regular life. Take
the negativity,
then you're gonna be in that same boat.
But if you wanna take it the positive
way, you do what you need to do,
and you make yourself sustainable, happy, and joy.
Valerie is someone who can step in wherever
needed, Whether it's helping at symposiums, working registration,
or supporting families at meetings on the road,
she is always there to lend a hand
and make sure things run smoothly. You know,
meeting new families, newly diagnosed families,
you know, reassuring them. Back when my son
was diagnosed and even my nephew, it was
around the time with HIV and AIDS. And
getting that diagnosis
was really devastating. And there's some guilt, mom
passing it down to their son usually.
It doesn't have to be devastating.
Meeting others with
something similar in common that's rare.
You know, it's not something that you're gonna
usually just, you know, meet people out in
the general public that know anything
truthful about hemophilia.
You learn. You meet people. I believe in
everything the coalition
offers.
I've learned so much about advocacy.
I've been to different programs where they have
taught us skills to advocate for ourselves
when going to the doctor,
advocating
with,
lawmakers and so forth. Valerie, Christopher, and Rick
never sought recognition for their work, but this
award serves as a powerful reminder that their
contributions matter, that the time, effort, and heart
they pour into this community is seen and
appreciated.
Yes. I so honored to receive an award.
I was not expecting that,
at all, and I really appreciate
that, the coalition thought of me as the
volunteer of the year. It's it's it's incredible.
It's incredible.
I love the hemophilia community, and I'm, like
I said, so happy
to be,
acknowledged for the volunteer work that I've done
and will continue to do. I'm hoarding the
award that they gave me, and this is
something that I cherish to this day. Volunteering,
helping out, being yourself is all the most
important thing to do. Don't lose yourself
at all. Even if you go down, make
sure you do not lose your character of
who you are, and that's what people want
to see. I really didn't feel like I
had done anything more than anybody else.
I guess maybe it's just I stuck around
and they can't get rid of me. They
figured they better give it to me.
And with that, some final words of advice
to everyone at the Coalition for Hemophilia b.
Be like water.
Water
is gentle. It's soft.
But at the same time,
it the continuous force of it can wear
away
the strongest,
surface.
So
the gentle nature, the gentle approach
is a way to,
obtain what you want.
Congratulations to the two thousand twenty four Volunteer
of the Year award recipients, Valerie, Christopher, Rick,
Fel, Melinda, and Colin, who remind us that
small acts of kindness create lasting impacts. They
are proof that giving back isn't just about
helping others. It's about building something bigger than
ourselves, a legacy of support, strength, and hope.
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
Bee and in partnership with Balancing Life's Issues.