Miyoshi Distal Myopathy - MM (Dysferlin)

Stanford University is collecting samples of blood, muscle and other tissues from people with neuromuscular disorders for use in research

posted on January 7, 2015 - 12:06pm
Ever wondered how someone with a neuromuscular disorder in his or her family might contribute to research efforts in this field?

My crutches were a source of anxiety about not looking ‘normal,’ until I learned to let go by just holding on to them

posted on January 9, 2014 - 9:27am
Quest Winter 2014
When I fell several months ago and couldn’t get up under my own power, I knew it was time to let go. Or rather, time to finally grab a hold. Christopher Anselmo For the first 26 years of my life, I could walk on my own with confidence. But on that day, as I propped myself up using the bumper of a car and a mailbox, I realized that was no longer the case. 

More than 40 new grants support new drug development, greater understanding of disease processes and more efficient diagnosis of neuromuscular diseases

posted on February 4, 2013 - 9:37am
The Muscular Dystrophy Association has awarded 44 new grants totaling $13.6 million to advance the understanding and treatment of neuromuscular diseases. The new grants, most of which took effect Feb. 1, encompass a range of diseases covered by MDA’s research program, and they support innovative approaches to basic research and new drug development. In addition to addressing 16 specific...

Investigators will determine how best to measure and track symptoms of dysferlin deficiency, with the goal of defining outcome measures for use in clinical trials

posted on September 25, 2012 - 10:15am
Update (July 17, 2014): This story has been updated to reflect that recruitment for this study has been extended through Aug. 31, 2014; that Sarah Shira is now the person to contact at the Jain Foundation; and that the foundation is now located in Seattle. ===================================================================================

A new zebrafish research model may speed myofibrillar myopathy research; published results of a gene transfer study in LGMD are now accessible

posted on July 18, 2012 - 9:37am
Update (Aug. 8, 2012): This story was updated to reflect the availability of a podcast on the dysferlin gene transfer study. Zebrafish research models mimic myofibrillar myopathy

Research items about Friedreich's ataxia, myasthenia gravis, mitochondrial myopathies, type 1 myotonic dystrophy, gene therapy and gene modification

posted on July 7, 2011 - 10:28am
Edison drugs target FA, mitochondrial diseases

An MDA-sponsored meeting explored progress in five key therapeutic strategies under development for neuromuscular diseases

posted on March 18, 2011 - 3:30pm
Moving therapeutic strategies from the laboratory to clinical trials and ultimately to the market as treatments was the theme of the MDA National Scientific Conference held March 13-16, 2011, in Las Vegas. Some 300 people attended the conference, the first in a planned series of such MDA-sponsored meetings that will emphasize new research and current medical care. The majority of presenters and...
posted on October 1, 2009 - 1:53pm
QUEST Vol. 16, No. 4
The following article contains items about: Friedreich's ataxia, Charcot-Marie-Tooth disease, myotonic muscular dystrophy type 1, amyotrophic lateral sclerosis, Emery-Dreifuss muscular dystrophy and distal muscular dystrophy (Miyoshi myopathy)