Past EventsCommunity Events

Walk For Strength

Saturday, June 10th Host a local walk, join an existing team, or make a donation of support! Here’s how: To host a local walk: Choose a Team Name, Walk Location, and Start Time. Locations may include neighborhoods, parks, hike and bike trails, school tracks, etc. Get Registered! Register Here Be sure to enter your Team Name […]

CCDS Awareness Day

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! Some ideas for individuals […]

Rare Disease Day

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 Rare Disease and CCDS Awareness on February 28, 2018. Rare Disease Day is a worldwide initiative. For more information on this international event, […]

Walk For Strength

Walk For Strength June 9, 2018 Registration is now open for the third annual Walk for Strength. 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 […]

Walk for Strength 2020

Sunday, August 2nd, 2020 This year we're walking as one big team! This year, while respecting local health guidance, CCDS families, friends, researchers, and supporters worldwide will be walking in support of those affected by GAMT, AGAT, and CTD. Hold your family's walk when and where it suits you and join us afterward at the Community Social Hour. #socialdistance […]

$15 – $500

Keynote Speaker – Dr. Judith Miller

Keynote: Lessons Learned From 2 Years of the Vigilan Natural History Study Dr. Judith Miller, Ph.D., Children's Hospital of Pennsylvania Click Here for the Direct Webinar Link Dr. Judith Miller is a clinical psychologist with 25 years’ experience in developmental disorders. She has a joint appointment as Assistant Professor in both the Psychiatry and Pediatrics […]


Holiday Heroes Fundraiser

Holiday Heroes is our annual fundraiser and this year we will be fundraising to support the continuation of Gene Therapy Advancement Awards in 2021 as well as drug development research. Visit our Holiday Heroes page to learn more and donate now! Learn more about the initiatives funded by the 2020 Holiday Heroes at ACD's research […]

CCDS Day 2021

  CCDS Day 2021 is February 1st. How has CCDS changed your story? If you’d like to participate in our #CCDSDay2021 Campaign, send us a picture of your child/family and a quote answering this question. Email  Please also sign and complete this release form, giving us permission to share your picture and quote.

Rare Disease Day 2021

February 28th is Rare Diseases Day. This year, we will raise awareness AND empower research!  Stay tuned for the launch of our CreatineInfo Registry. Together we will search for answers and help move research forward. To learn more, contact or sign up for updates here:

CreatineInfo Registry Launch

The ACD, in partnership with NORD, is launching a Natural History Study Patient-reported Registry on March 15th. Join the registry and help us further research for a better quality of life for those impacted by Creatine Deficiencies. Join at