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

02Sep 2017

Spiro holding his lunch bag in the kitchen

Do you ever have those days or seasons where things are just ‘alot’? I know my family goes through those days. They are hard moments… they seem consecutively laid and they are heavy. Alot of people I know have kids. I don’t walk a day in their shoes, nor do they in mine. But over the years I have come across those folks who complain about… well… in my opinion what would not even qualify as a bad day in my house. Continue reading

26Aug 2017

picture of ben smiling

I thought it would be beneficial to share a profile of our four, almost five, year old boy with Creatine Transporter Deficiency (CTD) named Ben, who presents without seizures. All our CTD kids are different, so this is by no means a profile of CTD, but rather, a profile of our kid with CTD. I hope this helps others searching for a diagnosis and provides awareness of what CTD means to a family like ours. Here is a day in the life of Ben. Continue reading