Cruising for Carter

Carter was just 5 months old when he was diagnosed with CTNNB1 Syndrome. This rare genetic disorder can cause developmental delays, low muscle tone, learning difficulty, speech delays, and more. Some kids with CTNNB1 are unable to walk and/or non-verbal as well. When I say this is rare, there are only nearly 430 cases, WORLD WIDE!!! It's easy to pass this off but the reality is with new genetic testing these numbers are growing, and these amazing kids deserve the best. CTNNB1 can be closely identified to cerebral palsy with their symptoms, many also requiring equipment and therapies to help them along the way. Carter has 4-7 therapies per week that include speech, occupational, physical, and feeding. He has a variety of equipment - including eyeglasses, AFO's, bath chair, a walker, and a stander. Carter is turning 2 in October and instead of gifts, he wants to raise money to help with research and development for a cure for himself and other kiddos with CTNNB1.

Now here's where you fit in. Research has been underway for a few years on CTNNB1. There is a medication and gene therapy they have done lab testing with, both showing favorable results. These medications/cures are in an extensive research and approval process and getting close to trial stage, however, trails are very costly. It cost nearly $1.5Million to produce enough medication for roughly 5 kids to take on a trail basis. Trials are on track to roll out as soon as a year. Obviously the more money raised, the more kids we can help and a better chance there is at figuring out the cure. We ask that you help Carter and kids like him by considering walking or running this virtual challenge. The funds raised will go to the non-profit group to directly fund the research and development of the medication. It would mean the world to Carter, and our family, if you help us accomplish our goal so we can give Carter the best life for him.