advocacy

MDA families eager for research breakthroughs take active roles to accelerate therapy development and spread awareness of MDA's mission

posted on July 14, 2015 - 3:19pm
Children and adults living with neuromuscular diseases are not only awaiting progress in the search for treatments and cures; they are directly supporting and advancing that progress in real and significant ways.

The quest for equal access continues for people with disabilities

posted on July 14, 2015 - 3:17pm
Quest Summer 2015
On July 26, 1990, President George H.W. Bush signed into law landmark civil rights legislation called the Americans with Disabilities Act (ADA), which is intended to eliminate barriers for people with disabilities. The law mandates that individuals with disabilities have equal access to public accommodations, employment, transportation, state and local government services, and telecommunications.

News and updates from the MDA community

posted on July 14, 2015 - 3:05pm
Quest Summer 2015
Uniting Today for A Better Tomorrow: Building on the telethon’s rich history to achieve new ways to reach and connect families

Refusing to be defined by his ALS, former NFL player Steve Gleason lives a life rich with purpose

posted on April 1, 2014 - 9:29am
Quest Spring 2014
In his eight-year NFL career as a safety and special teams standout for the New Orleans Saints, Steve Gleason never had the opportunity to play in a Super Bowl. Though Gleason’s not the type to live with regrets, watching his former team win it all in 2009 — just two years removed from his retirement — must have been bittersweet. But this year, during an otherwise lackluster game, Steve Gleason...

High energy, optimism prevailed at a February 2014 congressional briefing for Capitol Hill staffers on reauthorizing key muscular dystrophy legislation

posted on March 6, 2014 - 2:20pm
"The energy in the room was high, and the mood was optimistic," said Annie Kennedy, MDA's senior vice president of advocacy, speaking about the Congressional briefing on reauthorization of the MD-CARE Act that she attended and helped to organize. The briefing was co-hosted by MDA and other muscular dystrophy organizations in Washington, D.C., on Feb.

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

posted on January 9, 2014 - 9:31am
Quest Winter 2014
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts

posted on October 3, 2013 - 9:12am
Quest Vol. 20, No. 4
Times have changed dramatically since 2001, thanks to the passage that year of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act — a bill designed to advance research and health care for all forms of muscular dystrophy. Among the changes:
posted on October 3, 2013 - 9:11am
The timeline looks at the history of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act, which was passed in 2001 to advance research and health care for all forms of muscular dystrophy. To learn more about the MD CARE Act and MDA's involvement in the 2013 reauthorization, read MD CARE Act 2013: Building on Success.