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 […]
“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, […]
“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.
“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 […]
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 […]
“GAMT Newborn Screening Video” – Heidi I recently had the privilege of sharing my family’s GAMT story with a group of professionals from ARUP Laboratories.
“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 […]
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always know the correct response, so I usually just smile and […]