Eddie’s CTD Jouney
Eddie is turning 5 this December and is the baby of four. He has two older brothers: Landon (14) and Jordan(7), and a big sister Avery (12). He enjoys being outside and playing in the park, even if that means just running around.He also loves listening to Cocomelon and playing with his baby stroller.
Eddie started his journey with CTD in May of 2021 when he was 18 months old. That is when he had his first seizure. It was a very scary time for all of us and up until that point we all thought he was just delayed. Seizure meds have controlled his seizures this far and we are hoping it continues. He started therapy soon after he was diagnosed and has been working hard ever since. Eddie took his first steps at 3 years old and now he is constantly running and climbing on everything. He sees a speech, occupational and Physical Therapist at school daily and outside of school to continue to help with his development. While progress is slow he is making his own gains. It is a rollercoaster a lot of the time but we get through every obstacle thrown our way. He is the happiest little boy who gives the BEST hugs and kisses.
We want to continue to bring awareness to the CCDS community and help all those affected with these rare disorders. Thank you for helping support Eddie and those like him, without your support we would not be where we are with research today.
Holiday Heroes 2024
Holiday Heroes is ACD’s year-end fundraiser and all funds raised are dedicated to research.
ACD has been promised a donation of $125,000 when $200,000 has been raised. This is will be ACD’s largest ever single donation and will be monumental for next year’s CCDS research! Your help will go farther this year than ever before!
Children with Creatine Deficiencies are severely impacted in their daily lives by:
- Seizures
- Lack of Speech
- Intellectual Disability
- Autism
- Behavioral Issues
- And more…
Your donation will fund research to change this!
ACD has some very promising research initiatives underway. Additional funding will expand these efforts and launch new projects, such as:
- The next phases of promising research projects (2 large projects began in 2024)
- New fellowship grants to early career researchers (5 were awarded in 2024)
- Creatine Deficiency Research Centers (multi-project CCDS research institutions; University of Utah was launched in 2023)
- New projects with a focus on therapeutic development (proposals under review)
Thank you for being a Holiday Hero!
We can’t do this without you. Please donate today to fund CCDS research.
Questions? Contact ACD.
