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