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MDA advocacy in Washington

posted on April 1, 2013 - 9:23am
I have had the great privilege of witnessing some of the most transformative legislative moments in our MDA community’s history. While we have many heroes and legends among us, there are also many heroes whose names most will never know — people who, through their outreach to their elected officials, brought great champions to the cause of neuromuscular disease research and services.
posted on July 1, 2011 - 11:35am
QUEST Vol. 18, No. 3
The 46th annual MDA Labor Day Telethon is getting ready to squeeze 21½ hours of entertainment, awareness-building and fundraising into six prime-time hours on Sunday night, Sept. 4. The shorter show, which is expected to draw more viewers in its prime-time slot, will be fast-paced and jam-packed with top-notch entertainment. In addition to the shorter national broadcast, each hour of the local...
posted on March 31, 2011 - 9:50am
QUEST Vol. 18, No. 2
Spring has sprung in varying degrees around the country, a sure sign that summer’s not far behind. For many kids with neuromuscular diseases, summer can only mean one thing: “The Best Week of the Year!” — also known as MDA summer camp.

Originally titled in print: Peeking at 'the Cards You Were Dealt'

posted on October 1, 2010 - 4:30pm
QUEST Vol. 17, No. 4
James Lupski’s story has all the elements of a good sci-fi tale: a research scientist determined to uncover the cause of his own genetic disease, a friend and colleague who’s also an intrepid gene hunter, and a futuristic technology that not only pinpoints the molecular cause of the research scientist’s disease, but also opens the door to a new era of personalized medicine. But in this case, it’s...
posted on July 1, 2010 - 5:35pm
QUEST Vol. 17, No. 3
Having a baby can be the most thrilling and rewarding experience of a woman’s life, yet it also can be fraught with fear and uncertainty. This is especially true for women with neuromuscular disease. This special report takes a look at the issues that arise for expectant mothers with muscle disease and finds that, with proper care and planning, these women are usually — although not always...

How a father led a quest to discover a treatment for his critically ill children, and ended up the subject of a major motion picture

posted on December 31, 2009 - 1:22am
QUEST Vol. 17, No. 1
Most anybody who hears John Crowley’s story will call him a hero. It’s a logical label for a man who led a quest to develop a treatment to stop the disease killing two of his young children. The Crowley family’s incredible story has been chronicled in the media, a book and now a major Hollywood feature film. “Extraordinary Measures” will be released Jan. 22 with an A-list cast that includes...

How assistive technology saved my career

posted on October 1, 2009 - 10:12am
QUEST Vol. 16, No. 4
Using the keyboard and mouse were becoming increasingly difficult for me. For a writer, that can spell the end of a career. But does it have to?

Insights from research, medicine, exercise experts and people with muscle diseases

posted on April 1, 2009 - 3:01pm
QUEST Vol. 16, No. 2
I don’t exercise. If God had wanted me to bend over, he would have put diamonds on the floor. ~ Joan Rivers Physical fitness is not only one of the most important keys to a healthy body, it is the basis of dynamic and creative intellectual activity. ~ John Fitzgerald Kennedy If it weren’t for the fact that the TV set and the refrigerator are so far apart, some of us wouldn’t get any exercise...