“Notes from the 2023 Virtual Conference” —Kim
Notes from the 2023 Virtual Conference, General Sessions –Kim In 2022, I visited a full CCDS symposium for the first time….
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…
“Our Life with Epilepsy” – Nathan
“Our Life with Epilepsy” – Nathan Hello again, CCDS family, sorry it has been a while since I have contributed…
Creatine Decoded: The power of patient registries and patient-led research initiatives – How CCDS Families and Caregivers Can Drive Research
Creatine Decoded: The power of patient registries and patient-led research initiatives How CCDS Families and Caregivers Can Drive ResearchCreatine Decoded:…
“My Worst Fears” – Chelsi
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not…
“Creating a Meaningful Life in the Midst of COVID” – Nancy
“Creating a Meaningful Life in the Midst of COVID” – Nancy It’s 3 AM and I can’t sleep. Again. I…
“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….
“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…