Today is a day of both overpowering grief and overpowering hope in the SMA Community. As we described in our previous blog post, beautiful Avery Lynn Canahuati, of “Avery’s Bucket List” passed away yesterday at just 5 months old. In their latest blog, the Canahuati family asked that donations be made in Avery’s honor to Sophia’s Cure Foundation to help fund Dr. Kaspar’s gene therapy program, which will be headed to human clinical trial by late 2012 or early 2013.
As many of you in the community will remember, last year, an anonymous donor generously gave $400,000 towards the pre-clinical work for the gene therapy program. That same donor has contacted us today, and touched by Avery’s story, has committed to match, dollar-for-dollar, every contribution made in Avery’s honor to Sophia’s Cure Foundation — up to $500,000 — so long as the FDA approves the program for a human clinical trial.
Now is our chance to raise ALL of the money needed to bring this promising program to a clinical trial for children with SMA. Please spread the word by sharing this post. If you were thinking about donating to help CURE SMA, now is the time. Your contribution will have twice the impact.
And to Avery: your life may have been short, but your impact will be ever-lasting.
Gene Therapy’s Major Anonymous DONOR touched by AVERY”S BUCKET LIST
May 1, 2012 by 40 Comments