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2013 BMD Conference Covered Research, Medical Care and Daily Life

The 2013 MDA-supported Becker Muscular Dystrophy Conference, held Aug. 24 in Baltimore and co-hosted by MDA and Johns Hopkins Medicine, was "high-energy" with "phenomenal" presenters, says Annie Kennedy, MDA's senior vice president of advocacy, who attended and helped organize the meeting.

Some 130 people attended in person and many more, including some from outside the United States, attended online.

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.

MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD

"We now have numbers to point to," said Annie Kennedy, MDA's senior vice president of advocacy. "It's not just a back-of-the-envelope calculation anymore. It's real data."

MG: Can the Immune Response Be Tamed?

It can start with nothing more than a drooping eyelid or a slight slurring of speech, either of which can come and go and improve with rest. But it can progress, often gradually over weeks or months, to affect all the voluntary muscles, including those controlling breathing. Weakness may be minimal early in the morning after a good night's sleep and worsen throughout the day, especially after periods of activity.

Study Suggests Sleep-Disordered Breathing Common in FA

Results from a study conducted in Australia show that a nighttime respiratory problem called obstructive sleep apnea occurs more frequently in people with Friedreich's ataxia (FA) than in the general population.

Low Body Fat Linked with Risk of Developing ALS

Anecdotal evidence has long described a positive association between being lean or underweight and developing amyotrophic lateral sclerosis (ALS). Now, results from a large-scale study conducted in Europe appear to confirm these observations, showing that individuals with more body fat have a decreased risk of developing the disease.

Walk Like a Penguin: Anti-Slip Tips for People with Muscle Disease

Winter can be a beautiful time of year — especially when you're inside under a warm blanket, drinking hot cocoa and looking out the window at the glistening white and the snow-coated branches. Unfortunately, most people have to carry out their daily lives regardless of slippery conditions.

Slipping and falling are hazards for everyone in winter weather, but for people with neuromuscular diseases, it's crucial to be extra careful around snow and ice.

Living With

Dear Friends:

In 1992, at the age of 32, I was diagnosed with inclusion-body myositis (IBM).

Read more ...

MDA Webinar Discusses Spinal Bracing and Surgery in Children

A one-hour, MDA-sponsored webinar features two physicians and the parent of a child with spinal muscular atrophy (SMA) who has undergone bracing and surgery for a spinal curvature, as well as questions and answers from listeners.

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