I'm participating in the Unite For Bleeding Disorders Walk, to help raise funds for the Virginia Hemophilia Foundation. This organization has meant a lot to our family on a personal level, as my 14-year-old son Jack is a 4th-generation hemophiliac. We've been part of the organization since he was a toddler, and it's done so much to build community for our family. Currently, I am the President of the Board of Directors and my husband is the Finance Chair, as our ways of giving back to this great group.
Our goal is to fund at least one camper to attend a specialized hemophilia camp, which is $600 for a week. This gives campers a chance to be in a safe space with other children who understand the complexities of this disease.
In the 1930s, hemophiliacs had an average lifespan of 11. Now, they can lead a long and full life -- but with the help of expensive clotting medication. Every month, our insurance pays around $60,000 for Jack's medication. Not all families have the safety-net our insurance provides us. By building up this hemophilia organization, we can help advocate for medical coverage for all hemophiliacs, share support, and move towards important cures for the next generation.
We appreciate any support you can give our team! All contributions are tax-deductible!
Thank you in advance for your support, on behalf of Jack and the rest of the family.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."