“#MyGivingStory” – Jerry

24Sep 2019

The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school, who was diagnosed with L-Arginine: Glycine Amidinotransferase (AGAT) deficiency as an infant to share her story in regards to her diagnosis, why advocacy is important to her, what her hopes are for the future, and more, in honor of Newborn Screening Awareness Month. Continue reading

13Sep 2019

I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action Network (RAN) Ambassadors, Tamra and Jade. Together with representatives from the National Organization for Rare Disorders (NORD), Michelle and Rose, they offered an opportunity to engage with staff from Congressman Markwayne Mullins office. Though the Congressman himself was unable to attend, the opportunity to take advantage of his staff member, Josh, being present was very productive in the effort to spread awareness of topics that impact the rare disease community. Continue reading

21Aug 2019

A phrase I hear quite often is, “I don’t know how you do it.” I don’t always know the correct response, so I usually just smile and take it as the compliment I think they intend it to be. I am not sure what they are seeing from their perspective. Are they seeing Jacob throwing himself to the ground in a temper tantrum? Are they seeing him frustrated when he can’t communicate his needs? Are they seeing me as a frustrated mom trying to do my best with the situation? Are they seeing him as a happy child? I see all of these things.  Continue reading

07Aug 2019

My fourth Ironman is in the books. Lake Placid, New York is a beautiful place and the trip was amazing. Beth and I chose this location because not only could I participate in the Ironman event, but we were celebrating our 20th wedding anniversary and the venue did not disappoint! We won’t soon forget our time there. Continue reading

15Jul 2019

Hello again, friends! I know it has been a while since I have updated everyone on what’s going on in our daily lives. Well, I will be the first to say, things have been a bit hectic this summer, but the craziness is welcome and we love the way that our lives are evolving! Continue reading

10Jul 2019

The Association for Creatine Deficiencies is excited to partner with Coriell, a world leader in biobanking (the collection of biosamples for research purposes) to collect and store cells from patients with Cerebral Creatine Deficiency Syndromes. We need your help as a community to donate cell samples to enable research! Continue reading

07Jul 2019

I know I’m one of the lucky ones. We still have our son. There was a moment in time where I seriously considered giving up custody of my precious baby boy, my third child. Sam is 21. He has CTD and therefore, Autism, Epilepsy, Sensory Processing Disorder, food sensitivities, ah… you know the list. Continue reading

30Jun 2019

The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas about metabolic disorders. This year, the meeting included a satellite session on Cerebral Creatine Deficiency Syndromes, hosted by the Association for Creatine Deficiencies. Our ACD team was represented by the irrepressible dynamic duo Heidi Wallis and Laura Trutoiu. Continue reading

09May 2019

When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether they’ll have something that most of us take for granted. A friend. A real, honest-to-goodness friend. Someone they can relate to, who likes to be in their company, and who will be there for them in good times and bad. Continue reading

18Nov 2017

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.