“How Gio’s Diagnosis Affected Us” –Sylvia In 2019 I was planning to have a hysterectomy due to my endometriosis, but plans changed when I found out I was pregnant! This […]
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 […]
“A Diagnosis is a Chance at Hope” – Carlie By way of background, I am new to the CCDS community. Our 8-year-old son was diagnosed with CTD on 1 April […]
“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 […]
How Pharmacogenomics Hopes to Improve the Treatment of Cerebral Creatine Deficiencies Kim Tuminello, Director of Advocacy for ACD, recently sat down with Dr. Ruben Bonilla Guerrero, who is the Medical […]
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 […]
“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. […]
“It’s so Austin…” – Shelly “It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. […]