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.
posted on July 1, 2011 - 1:57pm
Thanks to improvements in diagnostic and clinical care, there’s a new population of people in the world: adults with “pediatric” muscle diseases.
MDA is committed to ensuring bright futures for all our children with neuromuscular diseases who will someday “transition” into adults with a different set of needs than they had as children.
'Know Your Rights — The Fair Housing Act' will feature a discussion and Q&A of the law regarding housing rights for people with disabilities
posted on May 19, 2011 - 5:25pm
Are owners of apartment buildings required to have accessible units? Can they charge higher rent for them? And can they refuse to rent to a person with a service dog?
These are just some of many questions about housing rights that will be answered Tuesday, May 24, 2011, during an MDA-sponsored webinar titled "Know Your Rights — The Fair Housing Act," beginning at 4 p.m. EDT, 2 p.m. MDT and 1 p.m...
MDA is conducting the first U.S. survey to determine the financial cost to families of muscular dystrophy, ALS and SMA
posted on April 13, 2011 - 3:17pm
Most people affected by neuromuscular disease know all too well that their condition is costly. MDA wants to find out just how costly — and then translate those figures into terms that will speak to policy makers.
