Community Events

ACHDNC Quarterly Meeting

Thursday, May 11, 2017

The Advisory Committee on Heritable Disorders in Newborns and Children will be having their next quarterly meeting on May 11th. If you would like to make your voice heard regarding the inclusion of GAMT on newborn screenings nationwide, you may register to make public comments at the ACHDNC website. Registration opens approximately two weeks before the meeting.

Walk For Strength

Saturday, June 10, 2017

The second annual Walk for Strength is coming soon! Be sure to get signed up by April 30th to use the 15% off code “family15” for families of four or more. 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
You can find more information and register by visiting the walk page.

Rockin’ For A Cause

Saturday, September 30, 2017

Micky and the Motorcars
The ACD is excited to host our first “Rockin’ For A Cause” fundraiser in Dripping Springs, Texas. The entertainment will be provided by Micky & The Motorcars. There will also be a silent auction. Proceeds support ACD education and research initiatives. If you will be in the Austin area and would like to join us, please email us for more information and tickets!

CCDS Awareness Day

Thursday, February 1, 2018

It’s official! February 1st is “Cerebral Creatine Deficiency Syndrome 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 already working on plans to make 2018 even better!
Ty and Paige wearing We are Rare t-shirts for CCDS day.
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
  • 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

Wednesday, February 28, 2018

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 CCDS Awareness on February 28, 2018.

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

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 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”