Reflections on the CCDS EL-PFDD By Celeste Graham, ACD Director of Education I had always thought of the Food and Drug Administration (FDA) as a very high-level governmental agency that […]
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service Special Message to CCDS Community from Former ACD Board Chair Laura Trutoiu When Rohan was diagnosed with Creatine […]
“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 […]
“Atypical Adventures: An Introduction” – Nathan Hello again, friends! I know it has been a while since I have updated everyone on what’s going on in our daily lives. Well, […]