“#MyGivingStory” – Jerry

08Nov 2023

“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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15Aug 2023

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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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

18Nov 2017

“#MyGivingStory” – Jerry

This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the charities they love. 

I just finished my second Ironman triathlon. It’s a lot. A lot of training. A lot of swimming. A lot of bike riding. A lot of running. And oh yeah, a lot of being distracted from real life because when you’re not swimming or biking or running, you’re thinking about swimming or biking or running. Also, it costs a lot of money. And, last, but not least, it requires a lot of support (and understanding) from your family to allow you to go through the process. It’s a very selfish act, and sometimes I cannot believe they let me get away with it. I say thank you A LOT.

So, when I was thinking about doing this very selfish thing for a second time, I thought about how I could possibly make myself feel better about being so selfish. It didn’t take a lot of thinking. The solution seemed pretty simple. I would raise money for The Association for Creatine Deficiencies.

I don’t put myself out there that often, and I strongly dislike asking for help. But I wanted to get real serious about this. The wife and I put together a Crowdrise donations page where we told the story of our two with GAMT, and what it meant to us to raise money for ACD. It’s so personal, and I was a little sketchy about being so open. But this required opening up, and I think it helped me to have something to hold onto during my training as well. It was now bigger than just me, and I prefer it that way.

I launched my official campaign on Rare Disease Day, and I called it “Suffering for a Cause.” My tagline was: “If you give, I’ll suffer for it.” I shared our story and facts about CCDS with family, friends, and coworkers. The response overwhelmed me. Before I had even begun my training plan, I already had contributions starting to add up. It was so humbling, and motivating, and inspiring. I couldn’t wait to get going.

As I progressed through my training, the cause pushed me forward through all the suffering and the selfishness. I competed in a few ramp-up events, and gave some updates on the website, and each time I did, the renewed support pushed me forward even more. There was no way I would let anyone down.

When I crossed the finish line this time, it was a very different feeling from the first time. I felt the same relief of being done, the same blend of fatigue and happiness. But this time, the sense of accomplishment was so much stronger. I gave my wife a hug and cried, thinking of how lucky I am to have her support, the support of our family, and friends, and coworkers, and even a few folks I don’t even know, who gave over $8000. A lot of money, a lot of joy, a lot humbling. I say thank you A LOT.

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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.