MDA’s National Advocacy Program Wants You!

by Annie Kennedy on July 1, 2008 - 1:45pm

QUEST Vol. 15, No. 4
Annie Kennedy

Since MDA was founded more than 50 years ago, advocacy always has been the undercurrent of our programs and services.

In September 2007, MDA launched a formal National Advocacy Office to effectively project the voice of our MDA community and protect the interests of the individuals and families we serve. The program has two goals:

  • to be an effective voice for the hundreds of thousands of Americans served by MDA, through representation in matters of public policy and research advancement; and
  • to encourage and facilitate active involvement of people with neuromuscular diseases in the community at large, as well as in matters of public policy of specific concern to those with disabilities.

These are exciting times! Medical knowledge of neuromuscular disease is deepening, and children and adults with these diseases are living longer, fuller lives. Research discoveries are leading us to promising treatments. But many of our federal agencies are not being provided the funds and resources needed to catalyze change.

In response to rising concerns, MDA, through its advocacy program, has partnered with other sister organizations to support the following legislation:

SMA Treatment Acceleration Act (House Resolution 3334 and Senate Bill 2042). This legislation seeks to enhance federal support for spinal muscular atrophy research and foster coordination of SMA efforts among key federal agencies.

MD-CARE Act Reauthorization (H.R.5265/S.2618). The MD-CARE Act, originally passed in 2001 and now up for renewal, provides funding for Centers of Excellence that conduct muscular dystrophy research. The reauthorization seeks to expand coordinated MD research efforts among federal agencies, promote creation of MD standards of care, and improve federal tracking of health outcomes among people with muscular dystrophy.

Medicare Access to Complex Rehabilitation and Assistive Technology Act (H.R. 2231/S.3510). This bill is in response to new Medicare rules for purchasing power wheelchairs and scooters. The new “competitive bidding” policy empowers Medicare to designate a few vendors in each area that Medicare beneficiaries are authorized to use. This limitation promotes a “one-size-fits-all” concept of care that’s inappropriate for people with progressive muscle diseases, whose needs change over time. HR 2231/S.3510 would exempt all “complex rehabilitation products and assistive technologies” from the competitive bidding process if they’re for individuals with a primary diagnosis “resulting from injury or trauma or which is neuromuscular in nature.”

Congressional Gold Medal for Jerry Lewis (H.R. 3035/S.1603). The Congressional Gold Medal is the nation’s highest civilian honor, awarded for outstanding service to the country.

Please Take 5 and become a part of MDA’s advocacy efforts by visiting our new page on the MDA Web site (, or by contacting your local office (800-572-1717), and learning what you can do to be a catalyst of change. Together, there is no limit to what we can achieve.

Annie Kennedy is MDA’s vice president — Advocacy, and is located in MDA’s National Advocacy Office at 1025 Connecticut Ave., NW, Suite 907, Washington, D.C., 20036. She can be reached by e-mail at advocacy@mdausa. org, or call your local office at (800) 572-1717.

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