“A Look into My Experiences at Rare New England” – Celeste
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with…
“Creating Capacity” – Janet
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I…
“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…
“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…