Tag Archives: CCDS

“Success Using Teletherapy” – Randi Most of the country has been on hold for a few months due to the COVID-19 virus. Even now, with the country reopening, our family […]

“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 […]

“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I felt a huge, monstrous, feeling of overwhelming and it never […]

“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 […]