Walk for Strength 5K (Run / Ruck / Walk) - NC

The Walk for Strength is the signature event of the Association for Creatine Deficiencies, bringing together families, advocates, and communities to support individuals affected by Cerebral Creatine Deficiency Syndromes (CCDS)—rare genetic disorders that include GAMT, AGAT, and CTD.  This inspiring global event creates a powerful space for rare disease families to raise awareness, build connections, and drive change. By participating, you help amplify the voices of those impacted and show solidarity with families fighting for treatments and a cure.  Your support makes a lasting impact on rare disease families...together, we can bring hope, awareness, and strength to those who need it most!

Funds raised from the 2025 Walk for Strength will go directly to the ACD PatientStrong Fund, which powers all ACD initiatives. Every donation helps drive lifesaving research, caregiver and clinician education, and advocacy for early intervention through newborn screening—critical steps toward improving the lives of those with CCDS.  By supporting the Walk for Strength, you help fund vital research, empower families with essential resources, and push for earlier diagnoses that can change lives.

Cerebral Creatine Deficiency Syndromes (CCDS) are a group of rare, in-born errors of metabolism that result in a lack of creatine in the brain. In AGAT Deficiency and GAMT Deficiency, the body is unable to make the creatine it needs. In Creatine Transporter Deficiency (CTD), creatine is made, but not transported into the cells where it is needed. Creatine helps supply energy to all cells in the body.  CTD is also referred to as SLC6A8 Deficiency, CRTR, and X-linked Creatine Transporter Deficiency.

Mutations in the SLC6A8 gene result in CTD.  While patients with CTD have the necessary AGAT and GAMT enzymes to form creatine, the creatine transporter does not function properly. This results in creatine in the bloodstream, but not in the brain and muscles.  To date, there is no proven treatment for CTD.  

It is often many years before the CCDS patient is diagnosed due to the non-specific symptoms of the disorders and the lack of clear dysmorphic features. CCDS patients are often first diagnosed with other disorders, including: Developmental Delay/Disability, Failure to Thrive, Cerebral Palsy, Unknown Mitochondrial Disorder, Movement Disorders, Gastrointestinal Disorders, Epilepsy, and Autism. 

The exact prevalence of Cerebral Creatine Deficiency Syndromes is unknown. Yet, sources estimate that approximately 1% of individuals with intellectual disabilities of unknown origin may have a Cerebral Creatine Deficiency Syndrome. It is also estimated that Creatine Transporter Deficiency (CTD) represents the second largest cause of x-linked mental disability behind Fragile X syndrome. There are more than 100 documented cases of GAMT Deficiency. AGAT is the rarest of the CCDS with only a few dozen known cases.

The Grahams live in the Charlotte area and host the Walk for Strength 5K in NC.  Their oldest son, Levi, has CTD.  He faces challenges every day, but it doesn’t stop him from enjoying some of his favorite things like, riding the lawn mower, taking trips on the school bus, and spending time with his therapeutic horse, Honey. With his big smile and infectious laugh, Levi’s resilience is a constant source of inspiration.

The CCDS community is driven by passion and perseverance, working tirelessly to educate, advocate, and fund research for treatments and cures. Now, the path forward is clear—accelerating research requires support from those who believe in a brighter future. Thank you for being part of this journey!