Quest Magazine

ALS Research Briefs

DNA variants

Variant sequences of DNA within a small region of chromosome 9 have been found to be associated with sporadic ALS (ALS without a family history) in a study that compared samples from people with and without the disease living in the United Kingdom, United States, Netherlands, Ireland, Italy, France, Sweden and Belgium; and in another study that compared DNA samples from those with familial ALS (ALS with a family history) to those without the disease in Finland.

See:

DMD Clinical Research Network Studying Dystrophin-Deficient Heart

Decoy Receptor Lures Myostatin, Helps Muscles

Luring away myostatin, and possibly other proteins that inhibit muscle growth, using a gene for a "decoy receptor" increased muscle size and strength in mice with a muscle disease resembling human Duchenne muscular dystrophy (DMD), a new study has found.

MDA Telethon Visits Past National Goodwill Ambassadors

Emergency Prep for People with Neuromuscular Disease

As storm season whips up, it’s wise to take stock of your emergency plan, especially if your mobility is limited.

Two veterans of weather emergencies — Barbara Twardowski of Mandeville, La. (who has Charcot-Marie-Tooth disease and uses a power chair) and Shelley Obrand of Davie, Fla. (who has a nonspecific form of muscular dystrophy and uses a power chair and respiratory assistance device) — offer these tips.

Learn More About Ceftriaxone and ALS

Editor's note: The information on joining this webinar has been updated, per the presenters, Sept. 1, 2010.

A clinical trial of the drug ceftriaxone in amyotrophic lateral sclerosis (ALS) is currently recruiting participants at 54 locations across the United States and Canada. (For details, see Ceftriaxone Trial Still Open.) Laboratory studies suggest the drug protects motor neurons from injury.

Leuprorelin Fails to Improve Swallowing in SBMA

 Reducing testosterone levels in a large-scale trial in men with spinal-bulbar muscular atrophy (SBMA, or Kennedy disease) did not significantly affect swallowing function, despite earlier indications that it might improve this aspect of the disease.

Michigan Man with CMD Vies for US Rowing Team Spot

Come the 2012 Olympics in London, Michael Lehmann stands a reasonable chance of representing the United States as a vital member of the U.S. rowing team.

Lehmann got close to making the team this year as a coxswain (“KOK-sun”), taking second place in individual tryouts. His biggest handicaps were his age (23) and level of experience (five years) – not his congenital muscular dystrophy (CMD).

Nationwide Children's Hospital Named MD Research Center

The National Institutes of Health (NIH) has awarded $7 million to Nationwide Children's Hospital in Columbus, Ohio, and designated the institution a Paul D. Wellstone Muscular Dystrophy Cooperative Research Center (Wellstone MDCRC).

Study Seeks People With Uncertain MD Diagnoses

A study to determine the early features of late-onset Pompe disease (acid maltase deficiency) is seeking 250 adults who have a clinical diagnosis of unclassified limb-girdle muscular dystrophy (LGMD), an uncertain diagnosis of other forms of muscular dystrophy (MD),or an unclassified myopathy(muscle disease)who do not carry any biochemical, metabolic, enzymatic, serologic (blood), molecular or pathologic diagnostic marker that confirms their diagnosis.

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