“A Diagnosis is a Chance at Hope” – Carlie By way of background, I am new to the CCDS community. Our 8-year-old son was diagnosed with CTD on 1 April […]
“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 […]
“Cerebral Creatine Deficiency Syndromes: The Road from Diagnosis to Therapies” – Erin I think most parents of children with Creatine Transporter Deficiency (CTD), like me, are painfully aware of the […]
“Bye, mom” – Nancy “Bye mom!” These were words I had longed to hear for nearly two years. Our youngest son, Sam, graduated high school in June of 2019. In […]
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 – […]
“Rare Diseases” – Lacy Being a parent of a child with a rare disease has its unique challenges. There are so many questions that you ask yourself on a daily […]
“The Carousel” – Nancy The bell rang, the music started, and we began moving slowly. The expression on his face changed almost immediately, and in that moment, I knew I […]
Creatine Decoded: How to Read your Genetic Test Report – Webinar Recap & Video This essay was written by Erin Coller, ACD Director of Communications with support from Sofia Balog, […]
“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, […]