posted on January 1, 2012 - 12:14pm
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
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
posted on September 28, 2011 - 5:31pm
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...
This August, MDA reps and lawmakers will address issues facing youth with muscle disease as they grow into adulthood
posted on July 29, 2011 - 10:27am
Would you like meet with your congressman to talk about issues important to families facing neuromuscular disease?
Please join us for the MDA Fly Out.
For the third year in a row, MDA families and advocates are gearing up for the MDA Fly Out — annual meetings with congressional representatives held in their home districts throughout the August congressional recess.
A woman with ALS finds that a little self-advocacy goes a long way
posted on July 1, 2011 - 11:48am
I live in Tempe, Ariz., a lovely suburb of Phoenix. Two years ago, when I determined that it was no longer safe for me to drive due to the progression of my ALS (amyotrophic lateral sclerosis), I began to look for alternatives to depending on my husband, Phil, to drive me.
posted on March 31, 2011 - 9:01am
Did you know that each of the more than 40 neuromuscular disorders covered by MDA is considered a “rare disease” because each affects fewer than 200,000 people in the United States?
Jonah Bascle, who has Becker muscular dystrophy, uses jokes, ramps and street protests to raise disability awareness in New Orleans
posted on October 8, 2010 - 3:55pm
Jonah Bascle (rhymes with “rascal”) unleashes his zany brand of stand-up comedy on New Orleans nightclub and restaurant patrons four or five times a week. As an unusual consequence of these gigs, more and more of the historical city’s old buildings are becoming accessible to people in wheelchairs.
As a guy who uses a wheelchair himself due to Becker muscular dystrophy, Bascle, 24, knows first...
