Congress Must Renew Fight Against Muscular Dystrophy

Senator Works to Reauthorize Legislation He Authored in 2001 to Help Find a Cure

September 22, 2008

Last week, I joined Olympic gold medal swimmer Ryan Lochte at a press conference on Capitol Hill, urging the immediate reauthorization of legislation I authored seven years ago to help find a cure for Duchenne Muscular Dystrophy (DMD).  Lochte, who recently won two gold medals in Beijing, lost an uncle to DMD and has made a commitment to raise awareness and help find a cure for this terrible disease.  His support provides momentum to the effort to renew my legislation and gives hope to the thousands of boys across the country that are battling DMD.  
                                          DEADLY DISEASE
Duchenne Muscular Dystrophy is the most common fatal genetic disorder diagnosed in childhood.  It affects one in every 3,500 boys born in America, equally affecting all races and cultures.  The disease causes a progressive loss of muscle strength, leading to loss of mobility and serious problems related to their heart and lungs.  Young men with DMD can live into their late twenties.

I became involved in the fight against DMD in 2001, after learning about the fatal disease from a Mississippian whose son had recently been diagnosed.  Though the gene that causes DMD was discovered 15 years before, no treatments had been developed.  In response to this dilemma, I introduced the Muscular Dystrophy Community Assistance Research and Education (MD-CARE) Act.  This legislation directed federal dollars toward DMD research and coordinated research activities across the federal government to work toward a cure.  The bill also established programs at the National Institutes of Health to put the disease on an equal footing with other disease groups of similar severity and prevalence. 

Over 300 members of the House of Representatives cosponsored my legislation, and comedian Jerry Lewis and Ed McMahon testified in support of the bill.  It also received a strong backing in the Senate, where Sen. Paul Wellstone, a Democrat from Minnesota, introduced a companion bill.  The legislation cleared Congress easily, and President Bush signed it into law in December 2001.

                                      MEDICAL ADVANCES
Seven years ago, before the MD-CARE Act became law, the majority of funding for muscular dystrophy was directed at the cost of care for children with the disease, not for research to find a cure.  Today, the National Institutes of Health is spending $54 million on muscular dystrophy research.  This research is yielding new drugs and promising approaches for treatment of the disease.  Recently, the FDA approved an experimental new drug that is thought to be effective in about 15 percent of DMD cases.  Additional funding I have helped secure has produced a drug that has cured DMD in dogs for the first time.  These breakthroughs are helping create increased interest in the fight against DMD and providing momentum for more research.

                            DEFEATING MUSCULAR DYSTROPHY
The MD-CARE Act has given hope to families across our country that are affected by muscular dystrophy.  The fight against this disease has come a long way in the last seven years.  Victory can be seen, but there is still a great deal of work to be done.  Congressional reauthorization of the MD-CARE Act will keep hope alive and help us build on the successes we have made toward defeating this disease.