“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 – […]
“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, […]
“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 […]
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD This essay was written by Celeste Graham, ACD Director of Education, with the support of Sangeetha Iyer, ACD Scientific Advisor. #CreatineDecoded is […]
Creatine Decoded: Behavior Support and the First ACD Webinar for Parents This essay was written by Celeste Graham, ACD Director of Education with support from Laura Trutoiu, ACD Director of […]
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy The following is our journey into using Medical Marijuana (MMJ) with our son who has CTD, autism, and epilepsy. For those […]
Creatine Decoded: Pharmacochaperoning & CTD Research Participation This essay was written by Erin Coller with the support of Laura Trutoiu, Director of Research, and Sangeetha Iyer, ACD Scientific Advisor. #CreatineDecoded […]
“GAMT Newborn Screening Video” – Heidi I recently had the privilege of sharing my family’s GAMT story with a group of professionals from ARUP Laboratories.