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...
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.
posted on January 1, 2011 - 3:29pm
Like it or not, some members of the MDA community will soon be trying out Medicare’s competitive acquisition program for “durable medical equipment, prosthetics, orthotics and supplies” (DMEPOS). The controversial program goes into effect in nine regions of the country this month.
Competitive bidding for durable medical equipment starts Jan. 1 despite criticism of the program; MDA is urging action and seeking feedback from those affected
posted on December 3, 2010 - 4:25pm
Competitive bidding among Medicare providers of durable medical equipment, prosthetics, orthotics and supplies (DMEPOS) is set to begin January 1 in nine regions of the country, despite sharp criticism of the plan by lawmakers, economists, patient advocates and others.
Under the new procedures, DMEPOS providers must go through a competitive bidding process to win the right to serve Medicare...
Disability advocates say many more preventative measures are needed
posted on July 1, 2010 - 3:21pm
In 2008, Kathleen Means, 50, was found dead from multiple stab wounds in her Rockford, Ill., apartment. Means, who had facioscapulohumeral muscular dystrophy (FSHD) and walked with difficulty, had lived alone since she retired in 2006. She was well-liked by her neighbors and former co-workers. Police could not discern a motive. One year later, they said they still had “few leads.”
The new health care reform law has many provisions of particular interest to people with disabilities
posted on March 23, 2010 - 1:08pm
The newly signed Patient Protection and Affordable Care Act, a dramatic reform of the health care system, contains numerous benefits for families living with neuromuscular disease.
The legislation, approved this week by both Houses of Congress, has features taking effect over the next several months that have implications for people with disabilities. These include expansion of insurance...
