I've worked at BDAI for the past two years and get to see the amazing work that the organization does. So many people throughout the state benefit from our organization, whether we see them once a year, or 20 times a year. That support network is so important for people with a rare disease.
Beyond that we also help teach kids at Camp Warren Jyrch how to infuse (administer their medicine themselves), lobby for healthcare access in Springfield and Washington, run education programs on everything from hemophilia 101, to specialized talks on joint health, insurance, self-advocacy, and beyond.
We also provide Medic Alert IDs which are vital in an emergency as well as an emergency financial assistance fund. Yet we need help keeping all these programs running.
Last year I ran the Chicago Marathon on behalf of a different charity. This year I got in as part of the lottery, and am choosing to fundraise on my own (not required just want to give back) for BDAI. I'm hoping to raise $1,000 for them this year. And since it is our Walk season, I decided to instead ask people to donate directly to my Walk page. Every little bit helps, so if you are able, please consider giving whatever you can. And if you really want come out and join me at the Walk on September 16th!
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."