Creatine Community Blog

27May 2023

“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

24Mar 2023

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

13Feb 2023

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

07Dec 2022

“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 greatly from person to person. So what does CTD look like for our son, Crosby? Continue reading

05Nov 2022

“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 has Creatine Transporter Deficiency. It is a diagnosis we never thought we would get mainly because we had never even heard of it. Continue reading

16Dec 2021

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 Potential Treatments

#CreatineDecoded is a quarterly educational essay series that sheds light on research relevant for Cerebral Creatine Deficiency Syndromes (CCDS). The essays and interviews feature community contributors, often parents, who with the help of the ACD, explore in their own words the CCDS science you want to know more about.

Have a topic in mind? Send suggestions to Laura Trutoiu, ACD Director of Research auract@creatineinfo.org. Continue reading

 

Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.