Advocates

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...

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

posted on January 9, 2014 - 9:31am
Quest Winter 2014
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts

posted on October 3, 2013 - 9:12am
Quest Vol. 20, No. 4
Times have changed dramatically since 2001, thanks to the passage that year of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act — a bill designed to advance research and health care for all forms of muscular dystrophy. Among the changes:

The daylong, MDA-supported conference held Aug. 24, 2013, focused on all aspects of Becker muscular dystrophy; videos are now online

posted on September 11, 2013 - 12:15pm
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...

The Ms. Wheelchair America program gives women with disabilities a platform for breaking down barriers and promoting important change

posted on July 1, 2013 - 9:07am
Quest Vol. 20, No. 3
Wanted: Articulate, dynamic, driven women with a strong vision for change in the world. Must be willing to break down barriers and connect with people of all backgrounds. Public speaking and statewide travel required. Candidates will be provided with expert training in handling media inquiries, optimizing social media networking, public speaking, current legislative and public policy trends, self...

A big sports fan with a bigger heart, this 11-year-old is ready to speak out for MDA

posted on April 9, 2012 - 12:00pm
QUEST Vol. 19, No. 2
Bryson Foster dreams big. No, make that B-I-G. But those with big hearts usually do. "Even if you dream small, those small things can turn into big things in the end," says Bryson, with wisdom beyond his 11 years. In true sports vernacular, he adds: "Go big or go home." So, Bryson continues to dream about one day being the starting quarterback for his beloved Cincinnati Bengals, or a professional...
posted on January 1, 2012 - 12:14pm
QUEST Vol. 19, No. 1
On a beautiful autumn day in September, six accomplished adults came to Washington, D.C., representing the voice and experience of hundreds of others who share the common experience of being adults living with “pediatric-onset” neuromuscular disorders. “We were the generation that was hoped for — and now we’re here,” said Vance Taylor, 33, a homeland security consultant from Washington, D.C., who...

Caring and dedicated amateur chef receives top honor posthumously

posted on October 1, 2011 - 3:34pm
QUEST Vol. 18, No. 4
Wherever he went, Scott Crane spread joy. At the Corner Bakery Café where he worked, he was known for being helpful and kind. When he volunteered for MDA and other organizations, he was always upbeat and enthusiastic. Even during long hospital stays due to respiratory issues, he remained cheerful and positive. “Spread smiles to everybody everywhere each and every day,” was one of his mantras.