medical management

It's Myasthenia Gravis Awareness Month 2015

In recognition of June being National Myasthenia Gravis Awareness Month, MDA is examining the disease from several perspectives. This article offers an overview of signs, symptoms, diagnosis and treatments for myasthenia gravis (MG), as well as information on drugs that people with MG should avoid.

New Guideline for CMD Diagnosis and Care

This spring, the American Academy of Neurology (AAN) released a guideline for the diagnosis and care of children with congenital muscular dystrophy (CMD), a group of early-onset, genetic disorders that can involve skeletal (including respiratory) muscle weakness, heart problems, brain and eye abnormalities, and contractures (frozen joints).

An early-onset disease with many genetic causes

AAN Releases Guideline for LGMD Diagnosis and Care

Recommendations for diagnostic procedures or care were rated by the AAN panel according to the strength of the recommendation. The AAN uses the following rating scale:

MD-CARE Act Congressional Briefing Accelerates Reauthorization Momentum

"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.

High-Calorie Diet May Help in ALS

A study supported in part by MDA has found that a high-calorie, high-carbohydrate diet is safe and well-tolerated in late-stage amyotrophic lateral sclerosis (ALS), that it leads to moderate weight gain, and that it may slow disease progression.

Blood-Filtering Procedure Removes Antibodies That Impede Gene Transfer

A research group supported in part by MDA has found that a blood-filtering strategy known as plasmapheresis looks promising as a way to help overcome one type of unwanted immune response to gene transfer therapy. Gene transfer therapy is the addition of therapeutic genes to treat disease, and it is often administered via transport vehicles made from viruses.

Louis Chicoine at Nationwide Children's Hospital and Ohio State University in Columbus, Ohio, and colleagues, reported the findings online Oct. 23, 2013, in the journal Molecular Therapy.

Study Seeks Parents, Guardians of Young Children with Neuromuscular Disease

The National Institute of Nursing Research, part of the National Institutes of Health (NIH) in Bethesda, Md., is seeking parents or guardians of children from birth through age 5 with a neuromuscular disease for a study to develop a questionnaire about motor function in young children.

Survey for People with IBM Reports Early Findings

Investigators conducting an online survey launched in January 2013 to gather anonymous information from people with inclusion-body myositis (IBM) are now reporting preliminary results and are asking the original respondents to complete a short supplementary survey.

Study Probes Impact of Early-Onset MMD1

Communication difficulties, social role limitations, problems with mobility and walking, and cognitive impairment were the most frequently mentioned themes in open-ended interviews conducted with people affected by congenital-onset or childhood-onset type 1 myotonic muscular dystrophy (MMD1, or DM1) or their parents.

Becker MD Conference Can Be Attended Online Aug. 24

MDA and John Hopkins Medicine will present the 2013 national Becker Muscular Dystrophy Conference Saturday, August 24, in Baltimore. Free to all participants with BMD and their family and friends, the conference can be attended in person or online.

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