Dear Friends & Family,
We are again asking for your support for the SMArt Walk for a Cure, which will be held on Saturday, August 4th at Beaver Island State Park on Grand Island. The walk is to raise much needed funds in the fight against Spinal Muscular Atrophy (SMA) - the #1 genetic killer of children under the age of two. Our team - Jake's Buddies - will walk in memory of our son Jake Thomas who passed away from SMA in December of 2008 at the age of 6 1/2 months. All money raised will go directly to Cure SMA, the national organization working to help raise awareness of SMA as well as funding for research, education, advocacy and patient services. Cure SMA has raised over $60 million since its inception in 1984, and over $40 million in the past 10 years alone. This money has funded a number of initiatives and there are many encouraging studies and drug therapies in development that can ultimately cure this disease. The best news is that on December 23, 2016, the FDA announced that it has approved Spinraza for SMA, making it the first-ever approved therapy for SMA, and the drug has made encouraging progress in many patients. There are also many other FDA-approved therapies pending, with 18 other ongoing drug programs, six of which are now in clinical trials. Please join me in supporting Families of SMA to find a treatment and cure for SMA.
To begin, just click on the "Donate Now" or "Join Team" link and follow the steps! Making a donation to Cure SMA is easy, secure and completely confidential The walk is a wonderful event in a great setting. There will be games, face painting, and other activities for children, as well as a basket auction. Hot dogs and refreshments will also be provided. It's a great family event and we had over 300 people at last year's walk.
Thanks to all of you for your past and continued support, and we hope to see you at the walk on August 5th!
Ron, Lori & Riley Faso