“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 […]
“Making Friends” – Nancy When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether […]
The Paradox of an Aging Special Needs Child” – Beth Standing in front of my kitchen sink in the cold, blue, January dawn, I run the warm water to wipe […]
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 […]
“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who I am. I’ve been this way since my first child […]
“Obtain, Maintain, Sustain” – Regina Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot to learn. We had a lot to help him overcome. […]
Creatine Deficiency Educational Video When it was decided to do the first ACD Scientific Symposium and Family Conference in Austin, TX 2018, the idea that so many of us would […]
“Super Bowl Sunday 2017—Diagnosis Day” – Erin Super Bowl Sunday marks two years since we officially received Cadman’s diagnosis. It was so strange answering an unexpected phone call from the […]