BENEFITING: International KS Foundation (GeneSpark)
EVENT DATE: Sep 24, 2016
Friends: A good friend has a 4-year old son that was diagnosed with Kleefstra Syndrome (KS) about two years ago. It is a rare and difficult syndrome that deals lifelong intellectual disabilities, as well as speech impairments and various other neurological/mental and physical abnormalities (including heart defects, kidney/urological defects, respiratory infections and seizures). There are no known cases of KS kids or adults living independently – all require lifelong care and cannot function in simple tasks we often take for granted.
That’s why I’ve decided to participate in GeneSpark.org’s inaugural Annual Kleefstra Syndrome Walk-and-Roll, which is a “virtual” event and that will take place during the dates of September 17-25. Families and other supporters affected by Kleefstra Syndrome will walk or “roll” (wheelchair, stroller or cycle!) their way across a self-designated 5km route in their local communities, all in support of funding drug development efforts around treating or reversing KS. I will be personally walking down Yonge Street (starting from St. Clair station all the way down to Union Station) on September 24.
This is a very important cause for me in helping my friend's family and many others. I will be matching any donations that is collected by my team. I would really appreciate your support.