MTM: Down With Dynamin 2

MTM: Down With Dynamin 2

Reducing dynamin 2 protein levels benefited mice with a disorder mimicking human myobutular myopathy; the strategy could have implications for MTM and additional diseases

Siblings of Children with Neuromuscular Diseases Need Attention, Too

Siblings of Children with Neuromuscular Diseases Need Attention, Too

The final story in the series covering the 2014 MDA Clinical Conference addresses helping the brothers and sisters of children with disabilities

Pain in Neuromuscular Diseases: Who Knew?

Pain in Neuromuscular Diseases: Who Knew?

This second of a series of three stories covering the 2014 MDA Clinical Conference discusses pain in neuromuscular disorders

New Forms of Genetic Testing Improve Diagnosis, Raise Questions

New Forms of Genetic Testing Improve Diagnosis, Raise Questions

This first of a series of three stories covering the 2014 MDA Clinical Conference discusses implications of new types of genetic testing

DMD: Phase 2 Drisapersen Results Encouraging

DMD: Phase 2 Drisapersen Results Encouraging

A phase 2 trial of Duchenne MD drug drisapersen found the high-dose group walked farther than the placebo group at 24 and 48 weeks

MTM Natural History Study Seeks Participants

MTM Natural History Study Seeks Participants

A study to determine the usual disease course of myotubular myopathy has sites in North America and France

FEATURED IN QUEST MAGAZINE

Through their partnership with MDA, our nation’s heroic fire fighters save lives even off the clock

posted on April 1, 2014 - 9:47am
The year was 1954. Dwight D. Eisenhower called the White House home, a gallon of gas averaged 22 cents, and the TV show “Father Knows Best” kept Americans captivated with Hollywood’s version of the perfect family. But, as explained in a 1954 article published in The Press-Gazette (Hillsboro, Ohio), no one knew best when it came to treating the estimated 200,000 Americans diagnosed with a “strange...

MDA’s critical support for people with ALS

posted on April 1, 2014 - 9:31am
For many, amyotrophic lateral sclerosis is a fast disease. Once diagnosed, the average life expectancy for a person with ALS can be as few as three to five years. When Ben Thomas received his ALS diagnosis at the age of 29 — just three months after the birth of his only daughter, Emmerson — his world was turned upside down. MDA vs. ALS MDA is the world leader in funding ALS research and...

Refusing to be defined by his ALS, former NFL player Steve Gleason lives a life rich with purpose

posted on April 1, 2014 - 9:29am
In his eight-year NFL career as a safety and special teams standout for the New Orleans Saints, Steve Gleason never had the opportunity to play in a Super Bowl. Though Gleason’s not the type to live with regrets, watching his former team win it all in 2009 — just two years removed from his retirement — must have been bittersweet. But this year, during an otherwise lackluster game, Steve Gleason...

How MDA-supported research to counteract a complement protein and rev up regulatory T cells may improve MG treatment

posted on April 1, 2014 - 9:27am
"I’m on CellCept, prednisone, Mestinon and IVIG every three weeks," says 38-year-old Rachel Pegram. "Prednisone, which I have taken for more than 22 years now, has very rough side effects. It has caused weight gain, diabetes and glaucoma. I cannot say I have ever gone into remission without drugs, but I believe I have been in a drug-induced remission. I have spent a lot of time in hospitals for...

Living with diminishing physical ability means losing some independence, but it doesn’t have to mean less adventure

posted on April 1, 2014 - 9:25am
Kristal Hardin Independence. It is unique to the human experience. People fight for it. Toddlers to teens demand it. It is the way we live. So when a debilitating disease threatens to take away the thing we cherish the most — our independence — most of us channel our inner “Rocky” and refuse to go down without a fight. 

Back to basics with some accessible cruising tips to help plan an adventure that meets your needs

posted on April 1, 2014 - 9:15am
For years, I have been told by accessible travel professionals that cruising is a terrific option for wheelchair users. My husband, Jim, is not particularly fond of water and had a long list of preconceived notions regarding nautical travel. After a great deal of coaxing, we sailed on Holland America Line’s Veendam, a mid-size ship carrying 1,350 passengers and 560 employees.