Notes from the 2023 Virtual Conference, General Sessions –Kim In 2022, I visited a full CCDS symposium for the first time. With both my background in neuroscience and my little brother […]
“Awareness” – Lacy I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob […]
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on the “Rare Sibling Experience.” As the mother of two children, […]
Creatine Decoded: CCDS Gene Therapy Research This essay was written by Laura Trutoiu, ACD Director of Research, with support from Erin Coller, ACD Director of Communications, and Sangeetha Iyer, ACD […]
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD This essay was written by Celeste Graham, ACD Director of Education, with the support of Sangeetha Iyer, ACD Scientific Advisor. #CreatineDecoded is […]
“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or be the first to use or apply (a new method, […]
Creatine Decoded: Behavior Support and the First ACD Webinar for Parents This essay was written by Celeste Graham, ACD Director of Education with support from Laura Trutoiu, ACD Director of […]
“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.
Creatine Decoded: Pharmacochaperoning & CTD Research Participation This essay was written by Erin Coller with the support of Laura Trutoiu, Director of Research, and Sangeetha Iyer, ACD Scientific Advisor. #CreatineDecoded […]
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with advocacy at the ACD and what I’ve been learning from […]