“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with advocacy at the ACD and what I’ve been learning from […]
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place and the trip was amazing. Beth and I chose this […]
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy I know I’m one of the lucky ones. We still have our son. There was a moment in time where […]
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas […]
Q&A With Dr. Ton DeGrauw— New Board Member The Association for Creatine Deficiencies (ACD) welcomes Dr. Ton DeGrauw as part of the Scientific Medical Advisory Board (SMAB)! Dr. DeGrauw joins […]
“What Are the Odds?” – Laura GAMT is really, really, rare. We all know that! I am sure quite a few of us have been told to buy a lottery […]
“Getting Better” – Amy 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 […]
“What About Me?” – Kelly I’ve made no secret that our family life is somewhat different from the norm. Our home life is different as we live with 2 of […]
“Travel Supplements” – Laura We recently returned from a very fun and needed vacation to Disneyland! It was magical with a 5 and 1 year old. We packed in all […]
“Saying ‘I Love You’” – Beth It wasn’t until this school year, Benny’s 7th grade year, that we realized he didn’t have the phrase “I love you” on his communication […]