Community Events

CCDS Awareness Day

Saturday, February 1, 2020

February first is Cerebral Creatine Deficiency Syndrome (CCDS) Awareness Day!
Help spread awareness of CCDS by celebrating this day in your community.
We kicked off our first celebration of CCDS Day in 2017 and are looking forward to our fourth annual celebration!

Some ideas for individuals in their hometown include:

  • Create a personalized campaign on our Crowdrise Page (Scroll down to the orange button “Create a Fundraiser”, enter your CCDS story and pictures, post on Facebook and it links back to support ACD’s campaign!)
  • Speak at your child’s school about CCDS.
  • Wear CCDS apparel, available at the ACD Shop.
  • Distribute awareness brochures and share your story with pediatricians, developmental pediatricians, pediatric neurologists, and geneticists in your area. For brochures and other materials to share on CCDS Awareness day, please email [email protected].
  • Blog, Tweet, Facebook, and Instagram your CCDS story and pictures of you spreading awareness on CCDS day, using the hashtags #ccds #ccdsday and #acd.

Rare Disease Day

Saturday, February 29, 2020

CCDS are considered rare disorders and the ACD is proud to support Rare Disease Day.
Help us join with other rare disease groups in spreading Rare Disease and CCDS Awareness on February 29, 2020.

Rare Disease Day is a worldwide initiative. For more information on this international event, visit rarediseaseday.org.

For more information about Rare Disease Day in the US, click here.

Shop and support ACD to get your CCDS Awareness merchandise today!

ACD’s Rare Disease Day partnership page can be found here.

For ideas of how to participate in rare disease day and both support this initiative and raise awareness of Cerebral Creatine Deficiency Syndromes, Click Here.


Rare Disease Day CCDS Feature:

Texas Children’s Hospital National featured this CCDS story for Rare Disease Awareness Week: “My Son’s Story”
http://www.texaschildrensblog.org/2015/02/national-rare-disease-awareness-week-my-sons-story/


Walk For Strength

June 2020


Information about the 2020 Walk for Strength will be announced in early 2020. This walk is meant to be participated in by all CCDS families in their local communities. Your group may be as small as 1 or as large as you can recruit! Email us for more ideas and flyers to distribute, etc. at [email protected].