Like many other people, we had not heard of Spinal Muscular Atrophy (SMA) until our grandson, Ryan, was diagnosed at the age of 26 months. Our family was devastated because SMA is a genetic neuromuscular disease with no treatment or cure.
Together with the help of family and many friends, as well as the Lemont, IL community, we are committed to fighting this disease, in honor of Ryan. We believe that no family should have to go through the painful diagnosis of SMA.
In 2011, we organized our first outing; now it’s time for Round 4 at Gleneagles C. C. in Lemont. Again this year, the outing will benefit Families of SMA, the leading non-profit organization dedicated to advancing the necessary research to fight this disease. Researchers now know exactly what
causes SMA. Through generous nationwide support, including many Leo alums, research and clinical trials are directly targeting the cause. Two local research grants were awarded in 2012 to Lurie Children’s Hosp. at Northwestern University.
We sincerely hope you can attend on Saturday, May 17, 2014 or are able to contribute to our event in some way. For SMA info: www.curesma.org More event info, including registering on line: www.fsma.org/RyanGolf2014 (Use www.)
Sincerely, Ken (Leo ’63) and Jeanne Emerson, Lemont, Illinois
Information below is from the Families of SMA website, please click the link to go directly to the site.
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