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CMDIR Newsletter

Updated: Oct 27, 2021

CMD Tissue Repository

Serving families and researchers in the quest to find treatment solutions.

Click here for the latest news from Tissue Repository Coordinator, Stacy Cossette.

To learn how you can participate in this vital research resource, please contact:

Stacy Cossette, MS

CMD Tissue Repository (CMD-TR) Manager



2017 Kicks Off with New Treatments for Pediatric Neuromuscular Disorders

by Cure CMD Scientific Director, Dr. Gustavo Dziewczapolski

The last week of December 2016 finds us with the first and second ever FDAapproved

treatments for two groups of affected individuals with Duchenne (DMD)

and spinal muscular atrophy (SMA). This long- awaited news arrives just in time to

wrap up a year of milestone achievements which began August 30th with the

Santhera Pharmaceuticals press release announcing the FDA grant to conduct a

Phase 1 Study of Omigapil (CALLISTO) for the treatment of Congenital Muscular

Dystrophy (CMD). These (click here for full article)


Please Update Your Profile

Please log into your CMDIR profile to update any changes to your contact

information and complete the Annual Update Survey, the third survey listed under

the Profile tab of your profile. We need your help to have the most complete

information available to make our registry strong!

Also, if you have not submitted a copy of your genetic testing report, please so do



Attend a Family Conference

2017 CMD Scientific and Family


July 7-9, 2017

The 2017 CMD Scientific & Family Conference in Arlington, Virginia will bring scientists, clinicians, affected individuals, their families and caregivers, as well as other industry stakeholders will join together.


MTM-CNM Family


July 21-23, 2017

The next US MTM-CNM Family Conference will

be held in Nashville,Tennessee July 21-23.


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