Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts
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
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
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
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...
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
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.
Officials learn from MDA panel about improving access to higher education, employment and independent living for people with disabilities
When Angela Wrigglesworth, who has spinal muscular atrophy and uses a power chair, first started college at Texas A&M, she planned to be a business major.
Getting to the business school, however, involved crossing a set of train tracks, and one day, Wrigglesworth’s chair got struck on the tracks.
Wrigglesworth received help from bystanders to free her 300-pound chair before a train came...