For more than four decades, Jerry Lewis has personified the fight against neuromuscular diseases. As National Chairman of the Muscular Dystrophy Association (MDA), he is a leader who battles with fierce determination on behalf of the more than a million Americans affected by these disorders. And to his millions of fans, he is not only an admired actor, comedian, director, producer and teacher, but a humanitarian striving to provide "his kids" a better future.
Jerry's determined efforts to raise funds for MDA's worldwide research program are turning that hope for a better future into reality. Just this year, MDA-supported researchers have uncovered the gene that, when defective, leads to the familial form of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), a fatal degenerative neuromuscular disorder that has long baffled science.
MDA-backed investigators have also identified the genetic causes of devastating neuromuscular diseases such as Duchenne muscular dystrophy (the most common and fatal childhood form) and myotonic muscular dystrophy (the most common form affecting adults). MDA is very close to finding the causes of the spinal muscular atrophies (which can affect people of any age) and Charcot-Marie-Tooth disease (the most common type of neuromuscular disease).
In 1992, MDA researchers announced that they had used genetic engineering to produce a properly functioning version of the gene that, when defective, causes Duchenne muscular dystrophy. Other MDA scientists reported positive results in animal tests of direct gene injections into heart muscle.
MDA's Number One Volunteer
Jerry has won the admiration and respect of millions for his unstinting dedication to MDA's goals. For more than four decades he's served as volunteer National Chairman of the health agency -- which seeks treatments and cures for 40 neuromuscular diseases.
Jerry is the most effective fund-raiser in television history. In the past 30 years, his Labor Day Telethons have raised more than $800 million for the effort to find treatments and cures for neuromuscular diseases, and to provide unparalleled patient and community services to those affected by them. Watched by some 80 million viewers, the 1996 Telethon raised a record $49.2 million in pledges and contributions.
Preparations for each Telethon begin an hour or so after the last one has ended, Jerry says. "People think I show up only on Labor Day -- that's hysterical." Jerry spends a good part of the year helping to plan each Telethon -- not to mention working intensively with MDA's national sponsors and expanding and improving the "Love Network," some 200 TV stations that carry the Telethon and constitute the largest independent network in broadcasting history. All this is in addition to appearances on behalf of MDA at business conventions and before civic, fraternal and youth groups, and meetings of MDA's Board of Directors.
There probably has not been a single day in the last 48 years on which Jerry has not met, worked for, phoned or just talked about youngsters living with neuromuscular diseases and MDA's effort in their behalf. He writes many patients and visits them when he is in their areas. The charges for his long-distance telephone calls to people with neuromuscular diseases over the years would "probably match the national debt!" Jerry jokes. As he tours the nation on professional and MDA engagements, he often has long talks with patients and their families at some of MDA's 230 hospital-affiliated clinics that his Telethons have helped establish.
Political Advocate for People With Disabilities
Jerry has been effective in enlisting aid for hundreds of thousands of patients with neuromuscular disorders through legislative action. In 1973, he appeared before the California legislature and petitioned for and received $1 million for the Jerry Lewis Neuromuscular Disease Research Center at UCLA, one of several major research/clinical centers established by MDA.
During a visit to the White House on March 16, 1981, Jerry presented President Ronald Reagan with a framed photograph of the UCLA Center in gratitude for the President's invaluable support -- as Governor of California -- of the state's historic "Neuromuscular Disease Research Act of 1973." The Act made possible the partnership between the state and MDA that resulted in construction of this major research facility.