Prolonged QTc, Long QT Syndrome and CCDS: Q&A with Dr. Mark Levin Dr. Mark Levin is a board certified pediatric cardiologist at the National Institutes of Health (NIH) and the […]
“Giant Boxes for Giant Walks” – Faith, ACD Programs Coordinator I wish I had taken a photo of the boxes that took over my home back in the summer of […]
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 […]
ACD Fellowship Projects Make Progress in 2022 The Association for Creatine Deficiencies (ACD) is playing an active role in funding research to find a cure and treatment for Cerebral Creatine […]
“Our Experience of CTD” – Kayla We’ve shared that Creatine Transporter Deficiency (CTD) can cause seizures, speech, intellectual, and motor delays, ADHD, and autism in people, but it can vary […]
“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 […]
The Power of Science and Connections – Thoughts on the 2022 Symposium When I volunteered for the PaReNts project back in April, I really wanted to be able to attend […]
Walk for Strength 2022 2022 Walk for Strength Guidance from a successful team captain- how to set up a team and recruit participants.
Creatine Decoded: ACD-Funded CTD Drug Repurposing Fellowships Make Progress in Year One Patient Samples from Coriell Biobank in Studies Seeking to Understand CTD Mutations & Explore Existing FDA-Approved Drugs as […]