Why We Walk: Team Champion

 In Unite for Bleeding Disorders Walk

As we inch closer to our 2023 Unite for Bleeding Disorders Walk on June 18, we asked Team Captains to share why they walk with NYCHC every year. Read Yasmin’s story below. 

Get involved in our Walk by forming your own team, registering to participate as an individual, or placing a donation at www.nychcwalk.org

 

This will be Team Champion’s eleventh year walking with the New York City Hemophilia Chapter. We walk every year to raise awareness and funds for the community to support investments into research to improve treatment. We walk to fund the educational programs that have taught my children so much about living with a bleeding disorder. We walk to ensure the Chapter can continue providing fun activities for kids to make friends—like mine have done. And we walk to support and give back to the community that has become our family. The high energy, music, magic, meeting and being hugged by community members, and seeing what is new in the industry brings us coming back to NYCHC’s Unite Walk every year.

My husband, Cyrus, and I moved to the United States from India when our two kids were young. Since then, some of our closest friends have been people from the bleeding disorders community that we met through NYCHC. This community is very close to our heart, and we feel so fortunate to call them some of our dearest friends.

NYCHC has provided our children with age-appropriate education about the disorder and has provided them with ways of sharing this information with friends and peers outside of the community. With the help of the chapter, our kids have learned to make educated decisions with their physicians and feel in control of their condition. I’ve seen a drastic improvement in their ability to advocate for themselves after taking part in the Chapter’s advocacy efforts, like the Washington Days.

Having a bleeding disorder in the family has also made my children understand the importance of giving back. While many organizations are trying to improve access to care in many different parts of the world, my kids understand how fortunate and lucky they are to live in the United States. This has inspired all of us to do our part and give back to the bleeding disorders community in any way we can—whether it is by volunteering at local events; building our Walk Team—Team Champion—to raise funds and awareness; screening movies, like Bombardier Blood, to educate others about bleeding disorders; participating in local and national events to share their experiences with younger kids about what it is like to grow up with a bleeding disorder, and so much more.

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