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September 2017

Rockin’ For A Cause

September 30, 2017

Rockin' For A Cause Dripping Springs, TX Saturday, September 30, 2017 ACD’s first ever benefit concert, "Rockin' for a Cause", was held in Austin, Texas at the Mercer Street Dance Hall. Live music was provided by Worn Out Souls and headliner Micky and the Motorcars. The event brought in over 200 people in support of CCDS and raised over $52,000! All proceeds from Rockin’ for a Cause go directly toward supporting programs for research, education, newborn screening advocacy efforts, and…

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October 2017

Children’s Neurology Society Meeting 2017

October 4, 2017 - October 6, 2017

Children's Neurology Society Meeting 2017 Kansas City, MO October 4-6, 2017 At this meeting, we were able to speak to many children's neurologists about the need for early diagnosis of CCDS. We were also able to answer their questions thanks to information from a survey completed by CCDS families.

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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

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CCDS Scientific and Patient Symposium

CCDS Symposium 2018

July 26, 2018 @ 6:30 pm - July 29, 2018 @ 12:00 pm CDT
The Westin Austin Downtown, 310 E 5th St
Austin, TX 78701 United States
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April 2019

CCDS Workshop at SIMD

April 8, 2019 @ 1:30 pm - 5:30 pm PDT

For more information, and to register for this event, please visit

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September 2019

CCDS Workshop -Rotterdam

September 6, 2019 - September 7, 2019

Dr Gajja Salomons, Xtraordinaire, and ACD have the pleasure to host the 2019 Symposium on Cerebral Creatine Deficiency Syndromes “CCDS” in Rotterdam on Friday, September 6 and Saturday, September 7.

This symposium offers a unique opportunity for...

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March 2020

Swing Fore CCDS

March 21
$125 – $5000

Swing Fore CCDS A Charity Golf Tournament Benefitting The Association for Creatine Deficiencies' PatientStrong™

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CCDS Symposium Registration

March 29 @ 8:00 am MDT
$15 – $250

2020 CCDS Scientific + Patient Symposium 2020 Symposium Rescheduled The ACD has been closely monitoring the spread of COVID-19 and working with our scientific medical advisors, in addition to following recommendations from the Centers for Disease Control (CDC) and World Health Organization (WHO), on precautions surrounding travel and large events. After careful consideration and at the advice of our scientific advisors, the ACD has decided in the best interest and health of all parties, to postpone the 2020 Scientific +…

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