MDA News and Updates

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Pompe Disease 'Chaperone' Drug Moving Forward
February 15, 2013
The experimental drug AT2220 has shown benefit as an enhancer of enzyme replacement therapy for the metabolic muscle disorder Pompe disease (acid maltase deficiency).
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DMD: Which Steroid Regimen Is Best?
February 15, 2013
Prednisone and other drugs in the corticosteroid family have become standard treatment for Duchenne muscular dystrophy (DMD) in much of the world for almost a decade. In this disorder, they slow the decline of muscle function and prolong walking ability.
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Strong Community Support Essential to Passage of Critical Muscular Dystrophy Legislation
February 14, 2013
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SMA 'NeuroNEXT' Biomarkers Study Seeks Participants
February 13, 2013
Update (March 28, 2013): This story was updated with a link to the ClinicalTrials.gov site for this study.
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Unique ALS ‘Exome-Sequencing’ Project Is Focus of New Grant
February 11, 2013
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FDA Approves Testing Multiple Sclerosis Drug in ALS
February 10, 2013
The U.S.
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Walk Like a Penguin: Anti-Slip Tips for People with Muscle Disease
February 08, 2013
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.
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DMD: Vasodilator Drug Study Needs Four Boys
February 06, 2013
A 12-participant study of the acute effects of two vasodilating drugs on blood flow to exercising muscles needs four more boys with Duchenne muscular dystrophy (DMD) who meet study criteria and are able to travel to Los Angeles.
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Grants Support Study of New Genes, New Drug Discovery Strategies for ALS
February 04, 2013
Twelve new grants totaling $3.6 million have been awarded in support of research studies that will explore the causes of, and potential treatments for, amyotrophic lateral sclerosis (ALS).
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$13.6 Million in New MDA Grants Promote Understanding, Treatment of Neuromuscular Diseases
February 04, 2013
The Muscular Dystrophy Association has awarded 44 new grants totaling $13.6 million to advance the understanding and treatment of neuromuscular diseases. The new grants, most of which took effect Feb. 1, encompass a range of diseases covered by MDA’s research program, and they support innovative approaches to basic research and new drug development.
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LGMD2A Registry Seeks Participants
February 03, 2013
A recently opened global registry— a database of patient information — is seeking people with the type 2A form of limb-girdle muscular dystrophy (LGMD2A), a form of LGMD that results from a deficiency of the calpain 3 protein.
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Diagnostic Blood Test for ALS Under Development
February 01, 2013
Development is under way of a blood test that may help doctors rule in or rule out a diagnosis of amyotrophic lateral sclerosis (ALS).
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FDA To Hold ALS Public Hearing: Input Encouraged by Feb. 8
January 30, 2013
The Food and Drug Administration (FDA) will hold a public hearing on amyotrophic lateral sclerosis (ALS) on Feb. 25. It will be open to individuals and caregivers affected by ALS, ALS clinical research experts, and those with strong opinions about the needs of the ALS community.
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Summer International Affairs Internships Available in Washington
January 30, 2013
If you are a college student or recent graduate with a disability and are interested in a career in international affairs, there’s a new internship program launching this summer in Washington, D.C.  However, if you want to be considered, you’ll need to hurry — the online deadline is February 18.
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ALS Research Briefs: Stem Cell Therapy
January 25, 2013
Development of stem cell therapy to treat amyotrophic lateral sclerosis (ALS) continued with two studies in mice, one by an Israeli biotech company and one by an Italian research team.
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MDA Webinar Discusses Spinal Bracing and Surgery in Children
January 25, 2013
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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Survey Open for People with IBM
January 23, 2013
A survey of people with inclusion-body myositis (IBM) is being conducted by A. David Paltiel, a professor of public health (health policy) and management at Yale University, with colleagues there and at the Myositis Association.
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How to Obtain Durable Medical Equipment Via Medicare
January 23, 2013
Durable medical equipment (DME), such as wheelchairs, walkers, portable oxygen devices and hospital beds, can be very expensive — and the process for obtaining them from Medicare can be very confusing.  Learn about Medicare coverage of DME and get the latest information on obtaining such equipment in a webinar Tuesday, Jan. 29, from 2 to 3 p.m. Eastern time.  
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MDA Establishes Myotonic Dystrophy Clinical Research Network
January 23, 2013
MDA has launched a new, five-center clinical research network focused on type 1 and type 2myotonic muscular dystrophy (MMD1 and MMD2, also known as DM1 and DM2), with the principal goal of preparing for testing of new MMD treatments as they become available.
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Spice for CMT1B? Curcumin Shows Benefit in Research Mice
January 20, 2013
Mice with a disorder resembling the type 1B form of Charcot-Marie-Tooth disease (CMT) benefited from treatment with either of two forms of oral curcumin, a component of the spice turmeric, according to researchers supported in part by MDA.
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