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December 2015

Walk Now For Autism Speaks

December 6, 2015

Walk Now For Autism Speaks Angel Stadium Anaheim, California December 6, 2015

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February 2017

CCDS Day & Rare Disease Day

February 1, 2017

CCDS Day & Rare Disease Day In 2017 we celebrated our first Cerebral Creatine Deficiency Syndrome Awareness Day on February 1st. This is a fitting time of year to recognize the importance of these rare disorders, as the world-wide Rare Disease Day falls on February 28th. The month was filled with posts of support and sharing CCDS education amongst all. The sense of community was inspiring as profiles on FaceBook were changed to a virtual CCDS ribbon and pictures were…

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June 2017

Walk For Strength

June 10, 2017

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 and share it with friends and family that plan to join your team. Get registered by May 15th. **Registrations received after May 15th will not…

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February 2018

CCDS Awareness Day

February 1, 2018
Ty and Paige wearing We are Rare t-shirts for CCDS 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 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…

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Rare Disease Day

February 28, 2018

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, visit For more information about Rare Disease Day in the US, click here. Shop and support ACD to get your CCDS Awareness merchandise today!…

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July 2018

Walk For Strength

July 1, 2018

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 to distribute, etc. at [email protected]

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August 2020

Walk for Strength 2020

August 2, 2020
$15 – $500

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 #quarantine2020 #keepcalmandwalkon *Register by July 4 to receive a "Keep Calm & Walk On" walk shirt! Register to Walk or Support a Team Registration Details…

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Keynote Speaker – Dr. Judith Miller

August 2, 2020 @ 2:00 pm - 3:00 pm PDT

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 departments at the Children’s Hospital of Philadelphia (CHOP), which is affiliated with the Perelman School of Medicine at the University of Pennsylvania. She is also…

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November 2020

Holiday Heroes Fundraiser

November 1, 2020 - December 31, 2020

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 strategy page and the Gene Therapy Consortium page.

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February 2021

CCDS Day 2021

February 1

  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 [email protected]  Please also sign and complete this release form, giving us permission to share your picture and quote.

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