Story
MED13L is a recently identified single-gene disorder, symptoms often times of MED13L include profound language impairment, hypotonia with motor delays, behavioral issues, seizures, and cardiac abnormalities. Although considered a rare disease, the MED13L population is likely over a million globally. The MED13L Foundation is a parent led group dedicated to improving the lives of children and families affected by MED13L by raising awareness and funding research to advance scientific research that will ultimately result in a cure. The Foundation has tapped into the new technologies that for the first time offer up HOPE for transforming the lives of people with MED13L. Costs are staggering and there is no readily available government or industry funding. By working together with patience, focus, and fierce determination, we can accomplish incredible things and pave the way for other rare diseases like ours. We ask today to CHOOSE HOPE for our community!