Living and Learning with GAMT
Living and Learning with GAMT After Jade was born in 1987, our family underwent major changes while working with early…
Reflections on the CCDS EL-PFDD
Reflections on the CCDS EL-PFDD By Celeste Graham, ACD Director of Education I had always thought of the Food and…
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…
“Are You a 21st Century Pioneer?” – Nancy
“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or…
“CLOSED.” – Nancy
“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t…
“Progress” – Lacy
“Progress” – Lacy My son recently said my name for the first time. I don’t mean he called me Mommy….
Creatine Decoded: Pharmacochaperoning & CTD Research Participation
Creatine Decoded: Pharmacochaperoning & CTD Research Participation This essay was written by Erin Coller with the support of Laura Trutoiu,…
“GAMT Newborn Screening Video” – Heidi
“GAMT Newborn Screening Video” – Heidi I recently had the privilege of sharing my family’s GAMT story with a group…
“A Look into My Experiences at Rare New England” – Celeste
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with…
“Jacob” – Lacy
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always…