Cure Creatine Deficiencies

The Association for Creatine Deficiencies (ACD) is an international nonprofit organization dedicated to the three Cerebral Creatine Deficiency Syndromes: CTD, GAMT and AGAT.

"I haven't walked away from my mission."

Beast Games champion and ACD board member Jeff Allen returns for Beast Games Season 2, using his success to drive awareness and fund the fight for a CCDS cure.

Resources for Newly Diagnosed Families

The ACD Family Network is a supportive, international network of families affected by CCDS. We are a parent-led nonprofit organization with Global Ambassadors ready to connect with you to provide localized support and resources.

Cerebral Creatine Deficiency Syndromes

Creatine Transporter Deficiency (CTD)

Guanidinoacetate Methyltransferase (GAMT) Deficiency

L-Arginine:Glycine Amidinotransferase (AGAT) Deficiency

ACD Family Stories

Mom and son walking for WFS
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GAMT siblings photo
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Little boy smiling to the camera.
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Our Research Efforts

ACD is committed to fostering and supporting a thriving research community for Cerebral Creatine Deficiency Syndromes (CCDS). As parents, our motivation to see treatments for our children is urgent and unstoppable.

Our research strategy is to fund, build, and share tools and resources that accelerate the discovery of treatments for creatine deficiencies.

ACD & our network of research partners are working to find a cure for CCDS at these institutions and others:

Newborn Screening

Newborn screening (NBS) is the collection of blood drops from a newborn’s heel onto a card of filter paper to screen for disorders that require immediate treatment. ACD supports the continued adoption of GAMT Deficiency and the research of plausibility for CTD and AGAT newborn screening. GAMT was added to the U.S. RUSP in 2023.

“Once I joined this group, and started to realize there are doctors and scientists working on a treatment for CTD, I started to see light and to feel hope.”

 

Thank you for supporting us in our mission to provide patient, family, and public education, to advocate for early intervention through newborn screening, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes. Your donation supports PatientStrong, our general fund that drives all ACD initiatives. Learn more about our initiatives here.