“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, […]
“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 […]
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 […]
“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.
“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 […]
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 […]