Walk for Strength at Wald Park

On Saturday, Aug. 20, 2022, local Birmingham 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).

A local Vestavia Hills family will join friends, family and other community members at Wald Park in Vestavia Hills, Alabama in support of their child, Eli (3). Eli was diagnosed with Creatine Transporter Deficiency last year and is affected by symptoms including seizures, severe speech delay, global developmental delays, and more. He needs countless hours of therapy to learn to do things like talk, eat with a fork and learn basic self-care skills. Without a treatment to get creatine into his brain, he faces a lifetime of challenges, epilepsy and disability.

CCDS is a group of three rare inborn errors of metabolism which interrupt the formation or transportation of creatine--Creatine Transporter (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.

The quality of life and future for everyone affected by CCDS is dependent upon finding treatments or cures that will work to get creatine into the cells and brains that need it to function properly. The exact prevalence of CCDS is unknown. Yet, sources estimate that approximately 1% of individuals with intellectual disabilities of unknown origin may have a CCDS. It is estimated that CTD represents the second largest cause of x-linked intellectual disability, behind Fragile X syndrome.

Local family of child affected by the rare disease, Creatine Transporter Deficiency, will be available for interviews.

Family, friends and neighbors walking together in support of raising awareness and funds to find a cure or treatment for creatine deficiencies at Wald Park in Vestavia Hills, AL.

WHEN:

Saturday, August 20

Start Time: 8:00 a.m.

Check-In Time: 7:30 a.m.

To find out more information on the Birmingham Walk for Strength in Vestavia Hills, AL or to register, please visit creatineinfo.org/walk (or go directly to the local page at creatineinfo.org/eli)

Pre-event media contact: Erin Coller, ACD Director of Communications 619-977-3500, erin@creatineinfo.org

On-site media contact: Britt Wolf, CTD Mom & ACD Ambassador 214-686-7182, britt@creatineinfo.org