LOCAL FAMILIES “WALK FOR STRENGTH” TO CURE RARE GENETIC DISORDERS

On Saturday, June 15, 2024, local Mondovi families will come together to participate in the international annual Walk for Strength event to raise funds, advocate, and support research for a cure for Cerebral Creatine Deficiency Syndromes (CCDS).

Crosby Williams is a 5.5 year old who was diagnosed with Creatine Transporter Deficiency in 2021. Due to his CTD diagnosis, Crosby, a sweet and happy boy, is affected by symptoms including seizures, developmental delays, speech delays, and more. Until a treatment or cure is found to get creatine into his brain, Crosby will continue to need countless hours of therapy to learn to do things like talk and learn basic self-care skills. As of now, Crosby is the only person in Wisconsin diagnosed with a creatine deficiency.

CCDS is a group of three rare inborn errors of metabolism which interrupt the formation or transportation of creatine–Creatine Transporter Deficiency (CTD), Guanidinoacetate Methyltransferase Deficiency
(GAMT), and L-Arginine: Glycine Amidinotransferase Deficiency (AGAT). Creatine is essential for healthy muscle and brain development — without it, children’s brains don’t get the creatine they need to develop and function normally. Children and adults with CCDS are affected by speech/language impairments, intellectual disability, behavioral challenges, and seizures.

TO BE PART OF THIS EVENT AND LEARN MORE CLICK HERE