“#MyGivingStory” – Jerry

02Sep 2020

Pioneer. Verb. A person who is among the first to develop or be the first to use or apply (a new method, area of knowledge, or activity). Parent or grandparent of an individual with special needs, do you feel like a pioneer? Well, you are!

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11Aug 2020

Education is one of the key parts of our mission here at the ACD. This “Creatine Decoded” blog post gives a brief overview of a topic near and dear to many of us as CCDS parents: what science and psychological theory say about what therapies work for our kiddos related to their behaviors. The ACD recently held a webinar focused on supporting parents in the CCDS community in regards to challenging behaviors.  I’m not sure about you, but we have seen an increase in behaviors the past few months in our house!

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15Jun 2020

“School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t answer him, he’ll just keep going.   Continue reading

02Jun 2020

My son recently said my name for the first time. I don’t mean he called me Mommy. He says that about a hundred times a day, even when he gets a response. He said my actual name. Continue reading

19May 2020

When it became clear that I would be caring for my son into his adult life, I knew that I had to make sure my body and mind would be ready for that. I knew I had to be as strong and durable as possible. Continue reading

06Mar 2020

The following is our journey into using Medical Marijuana (MMJ) with our son who has CTD, autism, and epilepsy. For those of us in OH, this is a new option in the treatment of seizures and most of us have little to no experience in the medical use of this product. In talking with other families, I realize that there’s a lot of confusion, stigma, and fear, but also curiosity, surrounding the use of MMJ in the treatment of epilepsy and other conditions, so I thought I would share what I’ve learned thus far on our journey with MMJ. Continue reading

05Feb 2020

I wanted to talk a bit about something that my son said to me last year. This surely stuck out in my mind as important to share here. I’m sure a large number of readers are parents or caregivers of a loved one with a creatine deficiency. Some parents may have more than one child. And given that every family dynamic is different and each affected child is unique, this is just our own family’s experience that led to this topic. Continue reading

20Jan 2020

Pictured: Dr. Sonja Sucic from the Medical University of Vienna presenting on pharmacochaperoning at the Creatine Deficiency Workshop in Rotterdam in September 2019

Being a CCDS/CTD mom, I understand that it can be very easy to put a huge amount of hope in the idea of prospective treatments. The exciting news is that it’s not just a cliché to say that we can each make a difference. Our individual participation in the research process is vital and necessary to help researchers in the quest to find a cure for CTD. There are researchers around the world working on innovative new ideas for therapies that could really work to help our loved ones. Providing access to patient data is in our hands as parents and caregivers, and it is not an understatement to say that if we don’t do our job, the researchers can’t do their jobs. 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.