JERRY LEWIS URGES $100 MILLION INCREASE IN GOVERNMENT FUNDING TO FIGHT MUSCULAR DYSTROPHY

Jerry Lewis with Benjamin Cumbo at the Senate subcommittee hearing.

TUCSON, Ariz., Feb. 27, 2001 - Entertainer Jerry Lewis told a Senate subcommittee today that a $100 million annual increase in government funding is needed to get to the next level in muscular dystrophy research.

Lewis, national chairman of the Muscular Dystrophy Association, made his first-ever appearance before Congress when he testified before the Labor, Health and Human Services, Education and Related Agencies Subcommittee of the Senate Appropriations Committee.

Lewis and a team of MDA representatives told committee members and the largest crowd ever to attend a disease-specific hearing that, while MDA has made tremendous progress in its 50-year history, it's time for the government to join the battle by significantly increasing National Institutes of Health funding devoted to research into nine forms of muscular dystrophy.

"The clinical trials that we need to conduct to test the things that we think could stop muscular dystrophy are incredibly expensive. Without government support, many trials will never happen and those that do will take much longer," Lewis said. "This is unacceptable. I cannot tell a quarter million Americans that they are not a national priority."

Lewis also introduced Benjamin Cumbo, a 13-year-old from Upper Marlboro, Md., who was accompanied by his parents, Benjamin and Deborah. The panel was shown a video profile of Benjamin, who has Duchenne muscular dystrophy and who served as MDA's National Goodwill Ambassador in 1996 and 1997.

Benjamin asked the panel, "If you can spend $2 billion on a single airplane, don't you think you can spend $100 million on muscular dystrophy?"

Lewis urged that millions in NIH funds be granted, not to MDA, but directly to researchers. He stressed for the panel that the need to do so is MDA's history of success in pioneering research toward treatments and cures for muscle-wasting diseases.

"Virtually every major discovery on this disease was funded by MDA. We've located the genetic defects for almost every form, we've tested countless drugs and compounds looking for the answer, we've developed techniques that are being used in the battles against scores of other diseases," Lewis said.

During the hearing, Lewis' efforts with MDA were lauded by committee members. Subcommittee Chairman Sen. Arlen Specter, R-Pa., and Sen. Larry Craig, R-Idaho, praised Lewis for his accomplishments in the last 50 years, and all he has done for the country.

Audrey S. Penn, M.D., deputy director of NIH'S National Institute of Neurological Disorders and Stroke, recognized MDA for its "tireless efforts over the years under the leadership of Lewis." Penn is a member of MDA's Medical Advisory Committee.

Also testifying on behalf of MDA was Leon I. Charash, M.D., a pediatric neurologist who serves as chairman of the MDA Medical Advisory Committee, and Christopher J. Rosa, Ph.D., scholar, educator and disability rights advocate who is a member of MDA's National Task Force on Public Awareness. Rosa is affected by Becker muscular dystrophy. Both men are members of MDA's Board of Directors.

At a press conference following the hearing, Lewis described the hearing as "absolute proof that this is the best country in the world. For a pratfall comedian to come before the Senate and ask for your help is an extraordinary thing."

Muscular dystrophy is the name given to a group of disorders caused by genetic defects and characterized by weakening and eventual wasting of voluntary muscles. The muscular dystrophies can also weaken the muscles of the heart and those required for breathing.

MDA is a voluntary health agency working to defeat neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education.

More information about the hearing, including testimony and biographical information about today's speakers, can be found on the Association's Web site, www.mda.org.

Read biographies of: Jerry Lewis, Benjamin Cumbo, Chris Rosa, Ph.D., and Leon Charash, M.D.

Read the testimonies of: Jerry Lewis, Chris Rosa, Ph.D., and Leon Charash, M.D.