CCDS Day 2024

Join us for CCDS Day 2024!

CCDS Day happens annually on February 1 when we unite our efforts as a community to raise awareness of Cerebral Creatine Deficiency Syndromes!

This year you can participate through our “This is CCDS” campaign (see below) and sign up for the International Creatine Deficiency Day Hybrid Event hosted by ACD and Boston Children’s Hospital. We hope you will join us for both!

“This is CCDS” message for new families

ACD community members:

Every week, parents of newly diagnosed children join our community because they need resources, support, and hope. We invite you to help by recording a short video message.

Share your message—parent to parent

Do you remember the early days of your child’s CCDS diagnosis? What information and support did you need the most at that time? 

Record a brief message for new CCDS families using your phone! Send us a short video (60 seconds or less, filmed vertically) with your words of wisdom and support. Pick any topic that you find most valuable.

Below are some ideas but feel free to speak from your experience and heart. 

  • What you wish you knew when your child was first diagnosed
  • Advice for how you conquered your biggest challenges such as school placement and successes, potty training, therapies, giving supplements, or other important milestones
  • Hope and Encouragement

Submit your message to new CCDS Parents

Submission Deadline: January 26, 2024

We are looking for video clips that are 60 seconds or less, filmed vertically (like you are on FaceTime), sharing your perspective. You can film yourself talking to the camera, or film your child doing something and *speak through the video.

*Using an app on your phone like “Voice Memos” or similar, you can also share an audio file that you’d like to accompany a background video (for example, you may want to show your child at speech therapy with an audio clip of you sharing a message like “going to speech therapy twice per week made all the difference for Steven.”)

**To protect your privacy, please avoid sharing last/family name, city/town, and birthdates. 

***Email us if you run into any problems at

CCDS Diagnoses(Required)
Instructions: Record for 60 seconds or less. Film vertically oriented.
Max. file size: 256 MB.
Instructions: Record for 60 seconds or less. Film vertically oriented.
Max. file size: 256 MB.
Instructions: Record for 60 seconds or less. You may upload an audio file or a video of you speaking if you'd like your message to play over a different video recording.
Max. file size: 256 MB.
Media Release(Required)
Please check button above to indicate you have read and agree to the following disclaimer: I have chosen to submit photo, video, and text to be used in the creation of a custom ACD materials. This content may be used across ACD's social media channels and website. By submitting any personal photo, video, or text, I grant ACD permission to use this content. ACD will never publicly use my email, or phone number.

CCDS Day Graphics: Raise Awareness!

Participate in CCDS Day and by raising awareness! Download CCDS day graphics for Zoom and social media.

Download email signature 

Download LinkedIn background

Download Zoom background