As you know, Eddie has a rare, currently untreatable, genetic condition called Creatine Transporter Deficiency. There are only about 350 cases in the world—all children that will not lead a normal life. It’s been 21 years since CTD was discovered and the needle is finally starting to move on research.
Last year, our parent group raised $94k for Gene Therapy research and drug development. While this may seem like a lot, much more is needed to fund these expensive projects. This year, we are aiming to raise $250,000 to drive research for Cerebral Creatine Deficiency Syndromes in 2022. We know this is ambitious, but we are confident that we can achieve this goal with your help!
This holiday season, we invite you to give alongside us. Eddie needs heroes! Every little bit counts and makes a difference.
Happy and healthy holidays!