Legislation and Policy

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 April 21, 2015 - 9:05am
Quest Spring 2015
A True Advocate: Kristin Stephenson, MDA’s new vice president of Policy and Advocacy, discusses her new role and her personal connection to MDA

MDA has responded to questions from the US House of Representatives about how to improve and speed up the drug development process

posted on June 13, 2014 - 3:45pm
Last month, the Energy & Commerce Committee of the U.S. House of Representatives launched a bipartisan effort called the 21st Century Cures initiative to accelerate the process by which drugs are discovered and delivered to patients. Congress has sought input from the patient community and advocacy organizations like MDA.

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.

News and updates from the MDA community

posted on January 9, 2014 - 9:07am
Quest Winter 2014
Featured in this issue: Muscle Walk in full swing across the country; anti-bullying advocate with Friedreich's ataxia publishes new book; MDA Clinical Conference to be held in March; MDA Team Momentum hits the ground running; Shamrocks program raises millions for the cause; MDA Art Collection achieves milestone; accessible playground database now available; Muscular Dystrophy Coordinating...

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:

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