Nemaline Myopathy Support Group

Research

Call for patients

Free MRI and ultrasound imaging

To date, no one has described and documented a significant number of Nemaline myopathy patients according to their muscle imaging appearance. At the world-renowned National Institutes of Health (NIH) in Washington DC, near the capital of the United States of America, they are offering free MRI and ultrasound imaging to characterize what muscle looks like in neuromuscular disorders.

The incentives for NM families and individuals to take advantage of this opportunity are great, and include:

  1. Reimbursement of all expenses to travel to the NIH (the visit will span over 2-3 days)
  2. Patients/families stay at the Children's Inn which is comfortable for all and specifically set-up for families with medically fragile children
  3. Free genetic testing offered to those who haven't had genetic confirmation yet (thousands in cost-savings for you) -- genetic confirmation of your diagnosis is important for clinical trials.
For more information and to arrange for your visit to the NIH, please contact:

Dr. Naz Dastgir at jahannaz.dastgir@nih.gov or PHONE 301-435-1507 or
Sandra Donkervoort at sandra.donkervoort@nih.gov or PHONE 301-496-0272.

The Congenital Muscle Disease Tissue Repository has launched and is accepting tissue donations

The CMD Tissue Repository is a place to safely store tissues donated through routine surgery or at autopsy that can be used for research. The Repository can also bring in left-over tissue from a previous muscle biopsy you had.
The CMD Tissue Repository was first conceived in 2011 after an alliance was struck between Cure CMD, The Joshua Frase Foundation, and A Foundation for Building Strength. Additional sponsorship has been obtained from "Where There's A Will, There's A Way", the Foye and Rutkowski families and endorsement from the LGMD2I Fund and the Samantha J Brazzo Foundation.

Through the Repository, we hope to bridge the gap between people interested in donating tissue and the researchers working toward the common goals of effective treatments and a cure for the Congenital Muscle Diseases.

For more information, contact the tissue repository manager, Stacy Cossette at scossette@mcw.edu or call 414-955-4685.

Supporting MAP Nemaline

In 2010 Meriel (aged 21 months) was diagnosed with Nemaline myopathy, a very rare muscle condition with no treatment or cure, which changed the lives of her family overnight. Setting up a family fund like MAP Nemaline is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward.

Learn more »»