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…
“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…
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…
“Awareness” – Lacy
“Awareness” – Lacy I find myself thinking a lot about awareness. It has been a buzzword in our lives for…
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:…
“The Rare Sibling Experience: NORD Webinar” – Erin
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on…
“New Rules for our School” – Randi
“New Rules for our School” – Randi We are very fortunate in our state to have scholarships for children who…
Creatine Decoded: CCDS Gene Therapy Research
Creatine Decoded: CCDS Gene Therapy Research This essay was written by Laura Trutoiu, ACD Director of Research, with support from…
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD This essay was written by Celeste Graham, ACD Director of Education, with…