Facioscapulohumeral Muscular Dystrophy - FSH or FSHD

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published new recommendations for doctors who see patients with facioscapulohumeral muscular dystrophy
posted on July 27, 2015 - 12:52pm
The American Academy of Neurology (AAN) and American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM)  have released a guideline for the diagnosis and care of people with facioscapulohumeral muscular dystrophy (FSHD), a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most affected.

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?

Researchers at the University of Michigan are conducting an anonymous, online survey to probe patients' impressions of the impact of their neuromuscular conditions

posted on May 1, 2014 - 10:22am
Update May 21, 2014: According to investigator Sindhu Ramchandren, 922 people had responded to this survey as of May 19, 2014. The study was closed to new participants at 5 p.m. EDT that day. At the investigator's request, the link to the online survey has been removed. Results will be announced when they become available...

This second of a series of three stories covering the 2014 MDA Clinical Conference discusses pain in neuromuscular disorders

posted on April 4, 2014 - 9:52am
The 2014 MDA Clinical Conference, held in Chicago March 16-19, was attended by some 500 people, mostly physicians and other health care professionals.

This first of a series of three stories covering the 2014 MDA Clinical Conference discusses implications of new types of genetic testing

posted on March 28, 2014 - 10:57am
“Knowing, if not all, is almost all,” said Matthew Harms, a neurologist and neurophysiologist from Washington University in St. Louis, in his presentation on genetic testing for neuromuscular disorders at the 2014 MDA Clinical Conference, held in Chicago March 16-19.

MDA's 2014 Clinical Conference on neuromuscular disease brings together health professionals from across the country and focuses on improving lives through excellence in care

posted on March 7, 2014 - 3:01pm
"Optimizing Care: Improving Lives Through Clinical Excellence" is the theme of the 2014 MDA Clinical Conference, which takes place March 16-19 at the Hyatt Regency in Chicago. A secondary theme — "I am progress" — also will be in evidence, referencing the crucial role that MDA clinic team members nationwide have in providing expert medical care in neuromuscular disease and identifying new...

High energy, optimism prevailed at a February 2014 congressional briefing for Capitol Hill staffers on reauthorizing key muscular dystrophy legislation

posted on March 6, 2014 - 2:20pm
"The energy in the room was high, and the mood was optimistic," said Annie Kennedy, MDA's senior vice president of advocacy, speaking about the Congressional briefing on reauthorization of the MD-CARE Act that she attended and helped to organize. The briefing was co-hosted by MDA and other muscular dystrophy organizations in Washington, D.C., on Feb.

An MDA-supported team has developed mice with transplanted muscle tissue from people with facioscapulohumeral MD that is likely to speed research  

posted on February 14, 2014 - 1:44pm
Researchers funded in part by MDA have created a new research mouse (mouse "model") that they say is likely to speed investigations in facioscapulohumeral muscular dystrophy (FSHD) and therapy development for this disease. It's expected to complement an existing FSHD mouse model.