Quest Magazine

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.

ALS Research Briefs

Biogen Idec and Knopp Neurosciences announced Aug. 18, 2010, that they have entered into an agreement to continue developing KNS-760704 (dexpramipexole) as an experimental treatment for ALS. The drug helps protect nerve cells under adverse conditions. A phase 2 trial by Knopp showed the drug had favorable effects on motor function and survival in people with ALS.

Research Briefs: ALS, CMD, FA and SMA

Amyotrophic lateral sclerosis (ALS)

Card Issued for Air Travelers with Disabilities

The U.S. Department of Homeland Security has issued a notification card that should make commercial air travel a little easier for people with disabilities.

The blue, wallet-sized card allows people to discreetly notify airport security personnel of a disability, medical condition or medical device that might affect the screening they’re required to undergo before boarding a plane.

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