MDA Advocacy

Geneticist R. Rodney Howell, chairman of MDA's Board of Directors, testified before a U.S. Senate subcommittee Sept. 26 to support continued funding for newborn screening

posted on September 26, 2013 - 11:16am
R. Rodney Howell, a pediatrician and medical geneticist who chairs MDA's Board of Directors, advocated for passage of the Newborn Screening Saves Lives Reauthorization Act of 2013 (S. 1417) before a U.S. Senate subcommittee on Thursday, Sept. 26. Howell emphasized that

MDA has supported a total cost-of-illness study for three common neuromuscular disorders that may affect drug development and social and economic policies

posted on August 14, 2013 - 4:00am
"We now have numbers to point to," said Annie Kennedy, MDA's senior vice president of advocacy. "It's not just a back-of-the-envelope calculation anymore.

MDA advocacy in Washington

posted on April 1, 2013 - 9:23am
Quest Vol. 20, No. 2
I have had the great privilege of witnessing some of the most transformative legislative moments in our MDA community’s history. While we have many heroes and legends among us, there are also many heroes whose names most will never know — people who, through their outreach to their elected officials, brought great champions to the cause of neuromuscular disease research and services.
posted on October 1, 2012 - 9:00am
QUEST Vol. 19, No. 4
Did you ever attend an MDA community event and see someone sporting a piece of durable medical equipment that you were sure your insurance would never cover? Or hear someone describe his or her experience with an insurance appeals process and think “how did they even know where to begin?” Or read articles in Quest magazine about other members in our MDA community who are traveling the globe and...

Know your candidates' views on crucial issues, and use your power as an advocate and a voter

posted on July 1, 2012 - 3:01pm
QUEST Vol. 19, No. 3
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.