“My AGAT Story” – Christina
“My AGAT Story” – Christina The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school,…
“Share Your Rare” – Regina
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action…
“Jacob” – Lacy
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always…
“IRONMAN Lake Placid Recap” – Jerry
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place…
“Atypical Adventures: An Introduction” – Nathan
“Atypical Adventures: An Introduction” – Nathan Hello again, friends! I know it has been a while since I have updated…
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy I know I’m one of the lucky ones. We still…
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony The Society for Inherited Metabolic Disorders (SIMD) holds…
“Making Friends” – Nancy
“Making Friends” – Nancy When your child is different, there are a lot of worries. We worry about their health;…
How Pharmacogenomics Hopes to Improve the Treatment of Cerebral Creatine Deficiencies
How Pharmacogenomics Hopes to Improve the Treatment of Cerebral Creatine Deficiencies Kim Tuminello, Director of Advocacy for ACD, recently sat…
“The Paradox of an Aging Special Needs Child” – Beth
The Paradox of an Aging Special Needs Child” – Beth Standing in front of my kitchen sink in the cold,…