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 […]
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 […]
“Our Life with Epilepsy” – Nathan Hello again, CCDS family, sorry it has been a while since I have contributed to the blog, but I am thankful to have the […]
Creatine Decoded: The power of patient registries and patient-led research initiatives How CCDS Families and Caregivers Can Drive ResearchCreatine Decoded: The power of patient registries and patient-led research initiatives – […]
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not enough? How about feeling lost and deep deep pain when […]
“Creating a Meaningful Life in the Midst of COVID” – Nancy It’s 3 AM and I can’t sleep. Again. I came across videos yesterday of Sam completing tasks for the […]
“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 […]