Since 2001, the MD CARE Act has had a tremendously positive impact on MD research — but its reauthorization this year will require active outreach
posted on February 14, 2013 - 11:31am
Note: The MD CARE Act is a critical part of the historic effort to find cures for muscular dystrophies. Watch for articles in the coming weeks that delve further into the remarkable progress attributable to this important legislation.
A proposed bill to create a pediatric research network cites Duchenne MD and SMA as examples of diseases where research is making great strides
posted on August 23, 2012 - 7:09am
In July, days before the U.S. House of Representatives and Senate went into recess, bipartisan legislation was introduced in both houses to strengthen research into pediatric diseases.
Know your candidates' views on crucial issues, and use your power as an advocate and a voter
posted on July 1, 2012 - 3:01pm
Did you know that people with disabilities are 10 percent less likely to be registered to vote, and 20 percent less likely to actually go to the polls and vote in an election?
MDA is supporting the inclusion of ‘accelerated approval pathway’ language in the Prescription Drug User Fee Act; community members should contact their legislators
posted on May 24, 2012 - 10:06am
Update (July 10, 2012) — Reauthorization of the Prescription Drug User Fee Act (PDUFA) was signed by President Obama on July 9, 2012, complete with a provision that creates an accelerated approval pathway for drugs for rare diseases.
If passed into law, the ABLE Act would create special savings accounts to be used for disability-related expenses without threatening other government benefits
posted on January 17, 2012 - 2:42pm
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...
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...
