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Welcome to Boundless Bee, the Hemophilia Bee Podcast.

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The podcast standing with you from a family

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like yours, presented by the Coalition for Hemophilia

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Bee and in partnership with Balancing Life's Issues.

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The Coalition for Hemophilia Bee is more than

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an organization. It's a national nonprofit

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serving this community now in its thirty fifth

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year. Beyond that, it's a family, a family

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built on shared experiences, resilience, and the willingness

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to lift each other up. At the heart

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of this community are the volunteers,

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the ones who dedicate their time, energy, and

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passion to making a difference.

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This is part two of a two part

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series where we are celebrating the incredible individuals

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that helped the Coalition for Hemophilia B thrive,

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our twenty twenty four volunteers of the year.

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In part one, you heard from Colin, Fell,

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and Melinda.

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And today, you'll hear from the remaining three,

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Valerie Schneider, Christopher Maddox, and Rick Starks. And

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if you haven't listened to part one, I

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encourage you to take a listen after the

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completion of this episode so you can hear

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the stories of the other three winners.

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Valerie's connection to hemophilia B began with her

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son, who was diagnosed with severe factor nine

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deficiency at birth. Over the years, she has

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dedicated herself to supporting not only her family,

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but also the wider hemophilia b community, ensuring

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that families navigating this journey never feel alone.

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Christopher has been part of the coalition since

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he was a teenager,

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living with hemophilia b and an inhibitor.

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Through volunteering, he's found his voice, helping to

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advocate for others who are navigating similar challenges

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and showing them that they are not alone.

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Rick's journey is one of resilience. Diagnosed with

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severe hemophilia B at birth, but it wasn't

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until his daughter was diagnosed that he truly

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stepped into the community. Through his work with

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the Coalition and by sharing his expertise in

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Tai Chi and movement, he has helped countless

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others manage both the mental and physical aspects

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of living with hemophilia B. Though their paths

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are different, Valerie, Christopher and Rick share one

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thing in common. The Coalition for Hemophilia B

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changed their lives and now they're making sure

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it changes the lives of others.

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Every journey begins with a first step, a

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moment when someone realizes they want to make

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a difference.

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For Valerie, that moment was deeply personal. She

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was looking for a community that truly understood

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her son's diagnosis

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and the unique challenges of hemophilia b. Actually,

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for the longest time, we didn't have the

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ease of connections that we do now, and

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it took me a while. I found my

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Florida chapter. And at one of those events,

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I was introduced to the Coalition for Hemophilia

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b. I was so happy because

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b is rare.

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It's more rare than hemophilia a. So to

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find an organization that was specific to what

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my son had where I hadn't really ever

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met any other, you know, outside my family

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with hemophilia b. For Christopher, volunteering was about

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amplifying voices, ensuring that no one else with

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hemophilia b would feel alone in their struggles.

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He wanted to be part of something bigger,

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something that could change lives. I wasn't hearing

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from other people that are in the same

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boat as I am. So maybe I should

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try to be a voice for other things

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that are going on in our community. So

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I just started going to different events, different

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things that happening. Yeah. I I guess I

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had, like, a bit of a dream connecting

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with people just to be connecting with people.

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And then I was telling them I had

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hemophilia and all that kind of stuff. And

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then eventually, I found out there was other

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places that had the same group of people

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that had the same problem, and now everything

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happened.

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And for Rick, getting involved with the Coalition

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for Hemophilia b was about breaking the silence.

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After spending years hiding his diagnosis, he found

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a place where he finally belonged and could

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give back. There were no camps when I

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was growing up. There was really no support

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system. You're on your own. That's what I

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thought

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till my daughter was born.

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Before that, I had hid my hemophilia from

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everybody. I felt that it was a weakness.

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I mean, it held me back a lot

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through my life, and I didn't want her

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to grow up that way. So I resolved

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to open myself up more. That way, maybe

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she would open her up into the community

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as well. So I found the Coalition for

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Hemophilia B. Right off the bat, I went

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to a men's retreat with Wayne Cook and

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Carl Wexler and a bunch of the other

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guys. I just fit right in. For the

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first time, I felt like I really fit

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in with this group of guys. For many,

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volunteering starts as a way to give back,

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but what they find is that it transforms

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them in a way that they never expected.

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Valerie found not just a cause, but a

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second family, a network of people who understood

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her journey in a way no one else

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could.

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It's important. It's something that I want to

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do. I enjoy it. I like giving back

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to the community, making the connections. And, honestly,

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all of the people that I've met have

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really become family. Christopher's journey was about more

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than just lending a hand. It was about

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discovering a newfound gratitude

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for the support system around him. Seeing the

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impact of his efforts gave him even greater

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purpose. And so it's a connection from one

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step to another. You never know who might

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have it or who doesn't have it, who

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has a femur, who has a history. Don't

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even know that they have it. Being myself

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and, just getting involved with the community, that's

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the main thing for me. Something that you

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love to do and you do it. You

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don't worry about anything else. You just spread

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your energy, spread your joy, and and then

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send it off to everybody else volunteering

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and showing that, hey. Life goes on. Even

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though we have something going on, you still

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make something happen. For Rick, volunteering was proof

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that the more you give, the more you

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receive. His experience helping others reinforce his belief

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that true fulfillment comes from service.

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My sharing of anything I can do to

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help has always come back to me tenfold.

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It's

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friends,

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the,

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the acquaintances that you make. Through the coalition,

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I've been allowed to travel throughout the country.

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I help host meetings on the road. My

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wife and I get to travel and see

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the world. So the community has meant a

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lot to me. I've never felt like I'm

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strain giving because the more you give, the

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more you receive.

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And it's a constant cycle,

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so I never feel like I'm over overtaxed

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by anything. What makes Valerie, Christopher, and Rick

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stand out isn't just their dedication. It's the

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way they bring their unique strengths to the

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community.

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Rick has used his knowledge and passion for

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Tai Chi to help others manage both the

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mental and physical challenges of hemophilia b. His

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classes have given community members a way to

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find balance, relieve stress, and improve mobility. I've

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had several people

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come up to me. I always know when

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I do a program

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how well and successful it was because of

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the people that wanna talk to me afterwards.

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And the ones

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that really have meant a lot to me

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are the ones that continue to come back

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at every session

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that I host. They're always there. I can

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tell they're getting something out of it. They're

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experiencing

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something new with every session.

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It's a mind body connection, which really should

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never have been separated anyway, but that's another

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story. Mind body should be one thing, period.

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Christopher has an infectious love for life and

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an overwhelming positivity that is felt by everyone

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he meets. He embodies what it means to

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turn adversity into strength and brings joy and

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encouragement to the community. I just find that

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it's easier to handle with joy and happiness.

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You have to throw away you know, when

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you have a disability, you have something that's

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gonna be a hindrance and do the things

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that you love to do. I do all

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these different things that, you know, you would

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wanna normally do in a regular life. Take

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the negativity,

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then you're gonna be in that same boat.

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But if you wanna take it the positive

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way, you do what you need to do,

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and you make yourself sustainable, happy, and joy.

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Valerie is someone who can step in wherever

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needed, Whether it's helping at symposiums, working registration,

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or supporting families at meetings on the road,

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she is always there to lend a hand

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and make sure things run smoothly. You know,

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meeting new families, newly diagnosed families,

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you know, reassuring them. Back when my son

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was diagnosed and even my nephew, it was

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around the time with HIV and AIDS. And

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getting that diagnosis

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was really devastating. And there's some guilt, mom

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passing it down to their son usually.

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It doesn't have to be devastating.

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Meeting others with

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something similar in common that's rare.

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You know, it's not something that you're gonna

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usually just, you know, meet people out in

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the general public that know anything

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truthful about hemophilia.

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You learn. You meet people. I believe in

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everything the coalition

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offers.

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I've learned so much about advocacy.

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I've been to different programs where they have

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taught us skills to advocate for ourselves

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when going to the doctor,

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advocating

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with,

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lawmakers and so forth. Valerie, Christopher, and Rick

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never sought recognition for their work, but this

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award serves as a powerful reminder that their

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contributions matter, that the time, effort, and heart

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they pour into this community is seen and

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appreciated.

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Yes. I so honored to receive an award.

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I was not expecting that,

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at all, and I really appreciate

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that, the coalition thought of me as the

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volunteer of the year. It's it's it's incredible.

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It's incredible.

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I love the hemophilia community, and I'm, like

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I said, so happy

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to be,

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acknowledged for the volunteer work that I've done

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and will continue to do. I'm hoarding the

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award that they gave me, and this is

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something that I cherish to this day. Volunteering,

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helping out, being yourself is all the most

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important thing to do. Don't lose yourself

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at all. Even if you go down, make

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sure you do not lose your character of

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who you are, and that's what people want

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to see. I really didn't feel like I

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had done anything more than anybody else.

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I guess maybe it's just I stuck around

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and they can't get rid of me. They

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figured they better give it to me.

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And with that, some final words of advice

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to everyone at the Coalition for Hemophilia b.

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Be like water.

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Water

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is gentle. It's soft.

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But at the same time,

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it the continuous force of it can wear

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away

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the strongest,

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surface.

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So

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the gentle nature, the gentle approach

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is a way to,

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obtain what you want.

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Congratulations to the two thousand twenty four Volunteer

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of the Year award recipients, Valerie, Christopher, Rick,

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Fel, Melinda, and Colin, who remind us that

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small acts of kindness create lasting impacts. They

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are proof that giving back isn't just about

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helping others. It's about building something bigger than

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ourselves, a legacy of support, strength, and hope.

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Thank you for listening to Boundless Bee, the

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Hemophilia Bee Podcast.

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The podcast standing with you from a family

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like yours presented by the Coalition for Hemophilia

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Bee and in partnership with Balancing Life's Issues.