Welcome
Welcome to the Association for Creatine Deficiencies (ACD), an organization dedicated to the three Cerebral Creatine Deficiency Syndromes:

ANNOUNCEMENTS

Register for the CCDS Symposium July 27-28 & support Ride for Ben.

The Association for Creatine Deficiencies is committed to providing 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.

What is CCDS?

Creatine helps supply energy to all cells in the body. It helps increase adenosine triphosphate (ATP).

Creatine is produced in the liver, which makes it out of three amino acids: arginine, glycine and methionine. Most of our body's creatine (approximately 95%) is stored in the muscles that support the skeleton.

Cerebral Creatine Deficiency Syndromes are a group of inborn errors of creatine metabolism. In an individual, symptoms can include, but are not limited to: intellectual delays, expressive speech and language delay, autistic-like behavior, hyperactivity, seizures, and movement disorders.

Creatine Community Blog

06Aug 2018

“It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. The hotel elevator has to use your room key to unlock the button so you can go up a floor, and it had no rhyme or reason if it was going to go up or down… It’s so Austin! The doughnut shop around the corner, Voodoo Doughnuts (brought to all of our attention by Mac Cafferty), where you can buy a cereal topped doughnut or one shaped like a voodoo doll… It’s so Austin! The local zoo that only houses rescue animals and its very offbeat and rustic landscape… It’s so Austin! So it seemed fitting that our odd, wacky, and unique CCDS Family was all congregated together in this town known for the odd, wacky, and unique. This is how our “family reunion” of sorts went down for the Alveys. Continue reading

29Jun 2018

Sonnet walking smiling

Since Sonnet wasn’t diagnosed with GAMT until she was seven-years-old, she is severely affected developmentally in every way. We found that with treatment and therapies she gained new skills quickly. Her therapists are a VERY important part of our team. Continue reading