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August, 2015

e-News Launch

The Association for Creatine Deficiencies is excited to announce it’s new interactive newsletter. “The Insider e-News” will highlight published reports and related topics to help support the Creatine Deficiencies Syndrome (CDS) Community. 

Breaking News: Newborn Screening In Utah for GAMT

The state of Utah is the first to initiate newborn screening for one of the three creatine deficiencies. Learn more here >

Creatine Deficiencies, Beginners 101

Creatine Deficiency Syndromes are inborn errors of metabolism, which interrupt the formation of creatine or the transportation of creatine. Find out more on all three deficiencies here > 

ACD'S Action Report

The ACD is committed to seeing our mission come to life. Here are a few examples of the ACD’s 2015 activities:
  • ACD presence/exhibits at medical conferences
  • Launching the PatientStrong Grant Program
  • Development of ACD awareness merchandise
  • Patient Registry
  • Collaborating with the CDC and Mayo Clinic on newborn screening
  • Ongoing communications with NORD and Global Genes
  • Website modifications and management
  • Increased presence on Facebook and Twitter
  • Research grant opportunities
  • Webinar planning
  • Fundraising, including a “Lobster Fest” event, to help implement new initiatives for 2016.

To date, the ACD has raised over $50,000 to help educate, advocate and fund grants for patients and medical research.

*The ACD operates purely by volunteers and does incur regular operating expenses.
Special Interest

Patient Summit

Global Genes 4th Annual Patient Advocacy Summit is scheduled for September 24-25, 2015. Register now, Connect-Educate-Engage-Achieve!
Learn More >

Calling all CDS Artists, Holiday Card Contest

The ACD is looking for a design for our 2015 Holiday Card. Submit your festive holiday design to Winner receives bragging rights and will be featured on our 2015 card!

Support & Follow
Now when you shop at, your purchases will support Association For Creatine Deficiencies. 
Enter Association for Creatine Deficiencies as "your charitable organization" and start shopping! 
You can now ask questions pertaining to CDS, right here! Ask your questions and one of our Scientific Medical Advisory Board members will answer you.
Click here to submit and look to see if  your answer is in one of our next e-news issues!

Let’s Find Treatments and Cures

Join the Patient Registry. Why register? It is important to collect critical information to understand the history and progression of CDS, to make it easier for researchers to study, for patients and families to learn about treatments and for advocates to speak on behalf of the CDS community.
Click here to register now >

We Heard Your Needs

The ACD is pleased to release its latest funding opportunity for patients with a CDS diagnosis that need assistance to help with associated medical expenses. The PatientStrong Grant Program is now accepting applications. Click here to view eligibilities, dates and application >

The Super Heroes Of CDS

Writing a personal story, read by others, tells our community that no one walks alone with a CDS diagnosis. Click here to read about how Melissa uncovered her son, Will’s, CTD diagnosis at the age of 12. 

Be A Champion For CDS, Volunteer Today.

Help the ACD by volunteering. Contact to see how you can get involved. We can’t do it alone.

This newsletter is only intended as information and the ACD does not suggest or indorse any or all related linked articles in "The Insider e-News". Linked site owners -- not the ACD -- own the intellectual property rights to the material on the linked sites and articles.
Copyright © 2015 Association for Creatine Deficiencies, All rights reserved.

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