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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

13Jul 2017

Today watching Levi peddle his bike as fast as his little legs would take him off the curb, as he demonstrated and showboated his new tricks on his bike, I couldn’t help but smile and celebrate with and for him. Prior to his diagnosis, there were so many “missed/delayed” milestones that it became frustrating at points for us as parents to wonder… sure every kid walks at different times, but our kid
doesn’t/hasn’t done (fill in many blanks here) yet. Continue reading

06Jul 2017

Family Photo

Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that an honest account of these emotions could be cathartic. I have gone from feeling sorry for myself, to feeling numb, to feeling a bunch of different emotions – some rational and others not so much. Ben was just diagnosed in January, so many of these emotions are quite raw. I thought perhaps others could relate to this daily struggle that I’m still trying to master – keeping the darkness at bay and clinging to the light. The following are some regular visitors in my daily assortment of emotional lows and highs. Continue reading