A little more than two years ago, a little girl in Clifton Park was diagnosed with an extremely rare genetic disorder that permanently damages her nerve cells. Hannah Sames is now the focus of much-needed research, which is expensive, but doctors continue to make major breakthroughs. The Hannah's Hope Fund is very close to winning a lot of money through an online contest to begin a clinical trial for treatment, but they need your help. Hannah's father, Matt Sames, stopped by our studio to talk more about this.
CLIFTON PARK, N.Y. -- A local non-profit charity is in the running for $250,000 that would go to help a 6-year-old Clifton Park girl who has a rare and fatal genetic disorder.
Winners of the the Pepsi Refresh Project are chosen by popular vote, and the Hannah's Hope Fund is receiving a big push from Capital Region residents.
Hannah Sames suffers from Giant Axonal Neuropathy, a disease that attacks the central nervous system, and the only thing that stands between her and a cure is a lack of funding.
Scientists working on GAN are on track to start their clinical trial in 2011, but funding is needed for the FDA toxicology studies, which are the last step in getting Hannah the treatment she needs. If Hannah's Hope Fund wins the Pepsi Refresh Project, the $250,000 would go directly toward paying for these studies and the expert doctors who would take part in them.
The last day of voting is Aug. 31.
THREE WAYS TO VOTE!
1. Text 101885 to #73774 (PEPSI)
2. Vote online>> After you click on "VOTE FOR THIS IDEA," click on the Facebook icon to establish a link to your Facebook account.
3. After you've finished voting in step two and after establishing the Facebook link, click the "SIGN OUT" link on bottom left. Click on "SIGN IN" and then "LOGIN WITH FACEBOOK" on the top left. Click "BROWSE IDEAS & VOTE" on right. On the top right of the Pepsi screen at the magnifying glass, type "HANNAH'S HOPE FUND" in the search field. Vote again!