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...
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...
"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...
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.
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.
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The research news featured in this section is a compilation of Quest News Online and MDA/ALS Newsmagazine Online articles posted between issues of the print magazine (Nov. 14, 2013-Feb. 10, 2014).
Download the Spring 2014 PDF to see Progress Now/Research Updates as it appears in the April-May-June 2014 print issue.
The Winter 2014 issue of Quest marks a new chapter for MDA’s flagship publication in print. Our goal with this redesign is to provide you, our dedicated readership, with a more contemporary and visually dynamic resource through which to present the research news and broader narratives that matter most to MDA families and supporters and all those affected by neuromuscular disease.
The year was 1986, and the Duchenne muscular dystrophy (DMD) community was more excited than it had been for decades. A group of MDA-supported researchers had identified the genetic cause of the disorder — any of a number of different flaws (“mutations”) in the gene for a newly identified muscle protein, one that would come to be called dystrophin.
When I fell several months ago and couldn’t get up under my own power, I knew it was time to let go. Or rather, time to finally grab a hold.
For the first 26 years of my life, I could walk on my own with confidence. But on that day, as I propped myself up using the bumper of a car and a mailbox, I realized that was no longer the case.