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 […]
“Awareness” – Lacy I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob […]
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 […]
“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 […]
“New Rules for our School” – Randi We are very fortunate in our state to have scholarships for children who qualify for an IEP but don’t attend public schools. This […]
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 […]
“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 […]