Oh wow!! It has been a really long time since I have posted. I posted this video because the boys in the video (Mike and Joey) have the same disease that my 8 year old niece has. Last March we went to Seattle for tests and Sheyenne got fitted for her AFO (leg brace). This spring was when she was finally diagnosed with GAN. GAN stands for Giant Axonal Neuropathy, if you would like to learn more about it, please check out www.hannahshopefund.org . There are approximately 43 people around the globe that are known to have GAN. Little to no testing has been done for it. There are clinical trials in the works for 2011. But first, Hannah's Hope Fund needs to raise money so the testing can place. So if you have any suggestions for fundraisers please let me know. I don't see myself winning the lottery anytime soon, or that would take care of it.
Wednesday, July 28, 2010
Subscribe to:
Posts (Atom)
