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...
Survey confirms importance of family caregivers to adults with muscle disease
posted on October 1, 2011 - 10:37am
In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of...
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.
Funds from the Affordable Care Act are now available in most states to help people move out of, or avoid, institutional care
posted on May 6, 2011 - 3:38pm
The federal government is moving ahead with plans to expand access to home and community based services for individuals who receive Medicare and Medicaid benefits.
HHS Secretary Kathleen Sebelius announced in April that $3.7 billion in federal funds will be made available to implement the Community First Choice Option, a provision of the new health care law (the Affordable Care Act) which...
International Rare Disease Day and a few proposed laws, policies and government activities of interest to the MDA community
posted on February 28, 2011 - 8:58am
International Rare Disease Day 2011
Monday, February 28, 2011, marks the fourth annual International Rare Disease Day, in which hundreds of patient organizations from more than 40 countries conduct awareness-raising activities around the slogan “Rare but Equal.” The worldwide event is an effort to draw attention to rare diseases and the millions of people who are affected by them — including all...
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.
