Hey everyone... friends/family... A good friend has a 4-year old son that was diagnosed with Kleefstra Syndrome (KS) about two years ago. Kleefstra Syndrome is 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 5K (3.1 miles) route in their local communities, all in support of funding drug development efforts around treating or reversing KS: I will personally be walking down Yonge Street on Saturday, September 25th. TL;DR Kleefstra syndrome (KS) is a rare genetic condition caused by a mutation or deletion of the EHMT1 gene, causing lifelong disabilities. GeneSpark.org is an international non-profit foundation, and is raising money to fund scientific research projects aimed at advancing a drug treatment for KS. I will be walking Down Yonge Street in Support of Kleefstra Syndrome on September 25th. Please support!