There was a time when running a 5K was not really possible for those diagnosed with severe hemophilia. The length of the run and the pounding of their shoes on the pavement could have caused internal bleeding into the ankles and knee joints.
Hemophilia is a blood disorder caused by the absence of a protein in the blood necessary to form a clot. There is no cure. Treatment is complex and can be extremely expensive, up to $300,000 annually for some individuals.
Hemophilia of South Carolina has members in 35 of the 46 counties. Every year, we provide supportive services, education, advocacy and outreach to hundreds of South Carolinians and their families who are affected by bleeding disorders. Ours is one of 52 chapters of the National Hemophilia Foundation.
Funding is difficult for non-profits that serve small populations such as hemophilia, which affects fewer than 20,000 people nationwide. Grants, donations and fundraisers are essential to our ability to assist those individuals affected.
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On Saturday, I will be participating in the annual Turkey Trot Walk 5K fundraiser in Columbia. Under the balloon arch that raises awareness of who we are and why we are there, I will have the privilege to call “On your mark, get set, go!” And so we will. Our children will walk, run, jog and even ride bikes. We still have a ways to go, but as we inch our way to a cure, which is our shirt motto, we will celebrate all that we have overcome and the bright futures of our tomorrows.
Let’s together take a morning walk and show support for our friends and families who live daily with hemophilia or a bleeding disorder. Please join me at 10 a.m. Saturday at the Riverfront Park and Historic Columbia Canal, 312 Laurel St. You can register or make a donation at hemophiliaofsouthcarolina.net. For additional information please call 864-350-9941. I hope to see you there.
President, Hemophilia of South Carolina