“How Gio’s Diagnosis Affected Us” -Sylvia
“How Gio’s Diagnosis Affected Us” –Sylvia In 2019 I was planning to have a hysterectomy due to my endometriosis, but…
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service Special Message to CCDS Community from Former ACD…
“A Diagnosis is a Chance at Hope” – Carlie
“A Diagnosis is a Chance at Hope” – Carlie By way of background, I am new to the CCDS community….
“Share Your Rare” – Regina
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action…
“IRONMAN Lake Placid Recap” – Jerry
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place…
How Pharmacogenomics Hopes to Improve the Treatment of Cerebral Creatine Deficiencies
How Pharmacogenomics Hopes to Improve the Treatment of Cerebral Creatine Deficiencies Kim Tuminello, Director of Advocacy for ACD, recently sat…
“The Paradox of an Aging Special Needs Child” – Beth
The Paradox of an Aging Special Needs Child” – Beth Standing in front of my kitchen sink in the cold,…
Q&A With Dr. Ton DeGrauw— New Board Member
Q&A With Dr. Ton DeGrauw— New Board Member The Association for Creatine Deficiencies (ACD) welcomes Dr. Ton DeGrauw as part…
“Obtain, Maintain, Sustain” – Regina
“Obtain, Maintain, Sustain” – Regina Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot…
“It’s so Austin…” – Shelly
“It’s so Austin…” – Shelly “It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I…