Tag Archives: AGAT

Hello, my name is Chelsi and I have CTD. 23 years have come and gone before I even knew about this condition. If it wasn’t for my son I would have gone my whole life without any knowledge. When I first got diagnosed I was scared. What does this all mean? How are people going […]

Wow! I’m still processing all of the things I learned from the 2018 conference in Austin. The CCDS Symposium was incredible! For me, the information was invaluable and as a result, I feel more equipped going into doctor and therapy appointments. Even more amazing were the connections and networking that happened—as a result of the […]

“It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. The hotel elevator has to use your room key to unlock the button so you can go up a floor, and it had no rhyme or reason if it was […]

After learning about our son’s Creatine Transporter Deficiency (CTD) this past January, we started down the path to begin supplementing with a set of amino acids. When you’re diagnosed with CTD and there is no treatment that reverses its symptoms, this is the most common treatment you can try, apart from therapies and other methods. […]

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. 

Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day.  

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