Creatine Community Blog

“Does It Get Easier” —Chelsi

Does living with CTD ever get any easier? When the burst of behaviors starts and you feel like you lost control how do you handle it? When your stresses are elevated what do you do?
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Notes from the 2023 Virtual Conference, General Sessions –Kim

In 2022, I visited a full CCDS symposium for the first time. With both my background in neuroscience and my little brother being a CTD patient, I wrote a guide that explained all aspects of CTD in such a way that families without medical or scientific backgrounds could follow. Continue reading

“How Gio’s Diagnosis Affected Us” –Sylvia

In 2019 I was planning to have a hysterectomy due to my endometriosis, but plans changed when I found out I was pregnant! This was very surprising because I didn’t think I could even get pregnant because of how bad my endometriosis was and when we tried years before it never worked. Continue reading

“No Limits” — Lacy

One of the hardest things about learning your child has a disability is the limits that are put on their life. The hopes and dreams you have for them change in an instant. However, once you take a moment to understand what it all means, things come into focus. The shattered pieces that you pick up and and put back together make a beautiful picture that you never would have imagined. 

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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 National Heart, Lung & Blood Institute (NHLBI), and has gained experience working with Creatine Transporter Deficiency (CTD) patients through his work on the Vigilan Observational Study. Dr. Levin presented at the 2021 CCDS Virtual Conference on “Cardiac Abnormalities in Patients and Animal Models of Creatine Transporter Deficiency” and a video of his presentation is available on the ACD YouTube channel.

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“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 2021. At the time I was living in a tiny apartment in downtown Salt Lake City. It was my first Walk for Strength with ACD. How many boxes does it take to transport 700 shirts? I remember asking myself. Surely, it won’t be that big of a deal. Sweet, innocent Faith. Continue reading

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 oversees all things safety and effectiveness, related to food, beverages, supplements, and medications… so high-level and inaccessible that they really didn’t have any interactions with the general public. Continue reading

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 Transporter Deficiency, or CTD, in June of 2017, my world was shattered. Continue reading

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 Deficiency Syndromes (CCDS), and a cornerstone of this effort is the ACD Fellowship program. Continue reading