Tag Archives: Cerebral Creatine Deficiency Syndrome

“Coping With the Fear” – Nancy I had just poured myself a cup of coffee and settled in for the 2-hour Ultragenyx Study, feeling I might have something to offer […]

“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t answer him, he’ll just keep going.  

“Progress” – Lacy My son recently said my name for the first time. I don’t mean he called me Mommy. He says that about a hundred times a day, even […]

“Pilates” – Beth When it became clear that I would be caring for my son into his adult life, I knew that I had to make sure my body and […]

“My AGAT Story” – Christina The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school, who was diagnosed with L-Arginine: Glycine Amidinotransferase (AGAT) deficiency as […]

“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action Network (RAN) Ambassadors, Tamra and Jade. Together with representatives 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 […]

“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 […]