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A P R I L   2 0 1 9
Breaking News!

Registration is now open for the 4th Annual Walk for Strength.

Join the Walk!

W A L K  F O R  S T R E N G T H  2 0 1 9
Walk for Strength registration is open! On Saturday, June 8th, CCDS communities worldwide will walk together in support of those affected by GAMT, AGAT, and CTD. All proceeds will support the 2020 CCDS Symposium.
  • Email a team name, a picture to feature on our sign-up page, and a walk location and time to
  • 15% discount for groups of four or more with code: GROUP
  • For more information, please visit
Register For the Walk
Mark Your Calendar!
C C D S  S Y M P O S I U M  2 0 2 0

The 2020 CCDS Symposium for families and physicians will be held on July 31 - August 2 in Park City, Utah! Stay tuned for more details to be announced in the near future.
Newborn Screening Update
S P R I N G  2 0 1 9

The ACD is pleased to report tremendous momentum in GAMT newborn screening in 2018. The state of New York began testing for GAMT in October 2018. Almost 400,000 babies are born in New York each year. Michigan approved the addition of GAMT in 2018 and is set to begin testing within the first quarter of 2019. Michigan has 115,000 births each year. Including the state of Utah, which began testing in 2015, there will be over 565,000 babies tested for GAMT annually in the U.S. continue reading...

How Pharmacogenomics Hopes to Improve the Treatment of CCDS

Pharmacogenomics testing is poised to change how we treat the symptoms of rare diseases, including CCDS. Learn more in our interview with Admera Health's Dr. Ruben Bonilla by clicking here.

ACMG 2019
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The ACD will be exhibiting at the 2019 ACMG (American College of Medical Genetics and Genomics) Annual Clinical Genetics Meeting in Seattle, WA. This meeting offers the opportunity for the medical genetics community to come together and learn about the latest research, therapies and practical implementation. Heidi Wallis, ACD Vice President and Laura Trutiou, ACD Director of Research will be in attendance. 
CCDS Workshop at the 2019 SIMD
A P R I L  6 - 9

ACD is hosting a satellite session at the Society for Inherited Metabolic Disorders (SIMD) Annual Meeting in Seattle, WA. The goal of this CCDS workshop is for medical professionals and researchers to discuss and reach consensus on treatment guidelines for all three diseases. Heidi Wallis, ACD Vice President and Laura Trutiou, ACD Director of Research will be in attendance. To learn more, click here.

Thanks to Alzchem and EveryLife Foundation for sponsoring this event! 
2018 Annual Report 
N O W  A V A I L A B L E

ACD is pleased to announce that 2018 was another record-breaking year for both fundraising and progress in advocacy and supporting research. Have a look at all of our achievements! To view the report, click here.

Holiday Hero 2018
F U N D R A I S E R  R E C A P 

Thank you to our CCDS community for being holiday heroes and donating to the ACD in support of PatientStrong™ this past holiday season. Support for PatientStrong™ benefits the ACD's education, advocacy, and research efforts to improve the lives of CCDS patients. To learn more, click here.
We Are #CCDS Superheroes 
C C D S  D A Y  R E C A P

Over 30 families worldwide participated in ACD's 'We Are #CCDS Superheroes' campaign in honor of CCDS Day, to raise awareness on this special day. Thank you to all families for your participation and efforts.
Reid's Blend Coffee & Rohan's Reseach Tea

Reid's Blend Coffee and Rohan's Reseach Tea are still available for purchase! Not only are these delicious options, but for each bag sold a donation will be made to the ACD!

This a great way to give back and to also spread CCDS awareness. Both of these options make for great conversation starters and are wonderful for gifting, your office supply, and even for your daily morning cup!

Buy Reid's Blend Coffee
at: Greater Goods Roasting
Buy Rohan's Reseach Tea
at: Friday Afternoon
CCDS Educational Video 

The Creatine Deficiency Educational Video has officially reached over 1,200 views! We are so thankful for the CCDS families and experts who helped create this video and ask that you please continue to raise CCDS awareness by sharing this video. To view the video, click here.

Be A Champion For CCDS...
Volunteer Today!

We are very thankful for the endless efforts of the volunteers that help ACD. From researching information, blogging, helping run our Symposium, and offering professional services- we are grateful for all the support we’ve received. If you have an interest in volunteering on a one-time or regular basis, please email us at Some types of volunteer work include: Blogging, Fundraising, Web Design, Graphic Design, Social Media, and Advocating in your state (and nearby states) for CCDS awareness and newborn screening.

When shopping select “Association for Creatine Deficiencies" as your charitable organization, or use this link, and a portion of your purchases will go to ACD. Thank you for your support!
Copyright © 2019 Association for Creatine Deficiencies, All rights reserved.

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