Operation "Fly Out" Begins

CRANSTON, R.I., August 16, 2010 – As many Rhode Islanders are squeezing in late summer vacations, it’s important to remember that neuromuscular diseases don’t take a vacation in stealing away muscle function from more than a million Americans. That’s why Muscular Dystrophy Association (MDA) constituents meet with U.S. Sen. Jack (D-R.I) on Tuesday, August 10, 2010 while the distinguished legislator is back home in Cranston during the brief August recess break from Washington politics.

The meeting, involving civic and business leaders with first-hand knowledge of the challenges families face because of progressive muscle diseases, is part of MDA’s annual “Fly-Out” campaign, orchestrated in communities across America since travel can be a real challenge for people with severe mobility impairments caused by muscular dystrophy, spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and related disorders.

This year’s “Fly Out” takes on even greater urgency as Congress considers the SMA Treatment Acceleration Act and the Competitive Bidding Act. Both pieces of legislation are vitally important to people with neuromuscular disorders.

Local representatives of MDA’s extensive ‘grassroots’ organization comprising families served by MDA, volunteers, sponsors and MDA clinic directors, met with Sen. Reed at 3:30 p.m. to urge him to back both pieces of legislation. Across the nation, similar MDA “Fly Out” meetings are being orchestrated with elected officials to take advantage of the August recess by the U.S. House of Representatives.

The SMA Treatment Acceleration Act facilitates collaboration and funding to find a treatment or cure for SMA, the number one genetic killer of children aged two or younger. It would provide federal support for a national SMA Clinical Trials Network, accelerating therapeutic developments. The SMA Treatment Acceleration Act also would provide federal support to expand SMA research, among other things. August is SMA Awareness Month, so the timing of the discussion with Sen. Reed is particularly meaningful to thousands of families served by MDA.

The Competitive Bidding Act would eliminate the flawed competitive bidding program for Medicare’s durable medical equipment services such as wheelchairs, leg braces and hospital beds for at-home care. The current bidding system often forces patients to go to unfamiliar providers and inexperienced/unlicensed providers at a greater cost to Medicare while causing confusion and distress for patients.

For more information, call MDA at (401) 732-1910 or (800) 572-1717, or visit http://www.mda.org/advocacy/flyout.html. Rhode Island-area families affected by neuromuscular diseases can receive excellent medical services at the MDA Clinic at: Rhode Island Hospital in Providence, R.I.

More than a million people in America are affected by neuromuscular diseases. MDA is the nonprofit health agency dedicated to curing muscular dystrophy, SMA, ALS and related diseases by funding worldwide research. The first nonprofit to receive a Lifetime Achievement Award from the American Medical Association (“for significant and lasting contributions to the health and welfare of humanity”), MDA also provides advocacy, comprehensive health care and support services, and education. For more information, go to: http://www.mda.org/.