Updated: Feb 18
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.
July 21-23, 2017
The next US MTM-CNM Family Conference will
be held in Nashville,Tennessee July 21-23.