Television has few traditions as strongly ingrained as the annual Jerry Lewis MDA Labor Day Telethon.

Adults who used to watch as kids now introduce their own children to the 21½-hour, star-studded variety show that simultaneously entertains, informs and raises funds for the service and research programs of the MDA.

First broadcast over Labor Day weekend in 1996 by a lone TV station in New York City, the unique event starring popular comedian Jerry Lewis quickly caught the public’s attention – and raised more than $1 million in pledges. Now, more than 40 years later, the show will be broadcast by some 190 MDA “Love Network” stations, assisted by 250,000 volunteers across the country.

In 1998, the Jerry Lewis MDA Telethon made history as the first telethon seen around the world via Internet simulcast, hosted by RealNetworks on MDA’s Web site.

An “interactive” show long before the computer age popularized the term, the Telethon derives its drama from the ever-increasing fund-raising total posted on the tote board – done originally by hand in 1966, now electronically. Jerry’s goal of raising “one dollar more” than the previous year’s among has been more than met almost every year, thanks to the generosity and compassion of the American public. Last year’s total was $63.8 million.

Viewership

Last year’s MDA Telethon was watched by roughly 40 million viewers in North America, and countless others worldwide online.

The Jerry Lewis MDA Telethon consistently achieves a significantly higher rating than any other televised fund-raising broadcast of its kind.

Where Telethon Dollars Go

The Telethon is the single most important fund-raising event of the year for MDA. Funds raised help the Association carry on its fight against more than 40 forms of muscular dystrophy and related diseases, including a worldwide program of basic and applied research, a nationwide network of comprehensive medical and support services, and extensive professional and public education.

Children and adults with neuromuscular diseases and related diseases benefit directly from dollars raised during the Telethon through such services as:

• Specialized medical and therapeutic care at some 225 university-affiliated MDA clinics and 38 MDA/ALS centers;
• Free flu vaccinations;
• Assistance with the purchase and repair of wheelchairs, leg braces and assistive communication devices;
• Support groups for individuals and family members;
• MDA summer camp sessions for thousands of children;
• Ongoing public education and up-to-date information through MDA’s Web sites in English and Spanish, publications, videos, seminars and media placements.

Research Advances

This year, MDA has allocated some $38 million for research, funding some 333 projects worldwide. MDA-funded scientists are making progress in understanding disease mechanisms, as well as testing promising treatments.

The Telethon carries information about MDA’s research efforts and features interviews with top scientists. Counted among advances in the past year were the following:

• Research at the MDA-supported ALS Therapy Development Institute in Cambridge, Mass., has made tremendous progress in standardizing animal models of the disease used in experiments, and in tracking biochemical changes associated with the disease. MDA has pledged $18 million to the ALS TDI over three years.
• The Translational Genomics Research Institute in Phoenix published an article in the prestigious New England Journal of Medicine about its findings of genetic differences between people with and without ALS – a cutting-edge project funded by MDA’s Augie’s Quest ALS research initiative. Small differences in various genes were identified, with one standing out as particularly significant. The function of that gene remains unknown.
• MDA began funding a trial of lithium carbonate, normally prescribed to treat bipolar disorder, in people with ALS, after a small trial in Italy showed promise for slowing progress of the disease.
• Further testing of the recently approved drug Myozyme, developed by Genzyme Corp. of Cambridge, Mass., with supplemental support from MDA, showed it improves endurance and pulmonary function in older children and adults with late-onset Pompe disease. Earlier tests showed it prolongs life in babies and young children with this metabolic muscle disease.
• The experimental medication PTC124, developed by PTC Therapeutics of South Plainfield, N.J., with MDA support, restored production of the needed protein dystrophin in six boys with a particular form of Duchenne muscular dystrophy (DMD) who took it at a high dose for a month. Earlier, about half of 26 boys with DMD who took PTC124 at a lower dose also began making dystrophin. The drug is designed to make muscle cells ignore an aberrant molecular “stop sign” in the dystrophin gene, a mutation that occurs in about 15 percent of DMD cases.
• Six boys with DMD who received arm-muscle injections of miniaturized dystrophin genes inside viral transporters showed that the gene therapy compound can be safely tolerated. The compound, called Biostrophin, was developed by Asklepios Biopharma of Chapel, Hill, N.C., with substantial support from MDA.

Since last year’s Telethon, MDA-funded researchers also have:

• released, in conjunction with pulmonary specialists, recommendations for anesthesia usage in patients with DMD;
• discovered that nervous-system support cells known as astrocytes may play a larger role in ALS than previously thought;
• developed guidelines for disease management in spinal muscular atrophy (SMA) in conjunction with other SMA groups;
• identified the gene for a rare form of SMA that stems from an error in an X-chromosome gene.

Celebrity Support

MDA is blessed to have the support of a shining panoply of stars – entertainers, athletes and leaders in business, government and civic affairs – who participate in the Jerry Lewis MDA Telethon and other MDA activities.

Among those on MDA’s Board are Ed McMahon, longtime Telethon anchor; noted singer and Telethon favorite Maureen McGovern; and Olympic gold medalist Bart Conner, also a frequent Telethon co-host.

Other notables serve as MDA vice presidents, including Jann Carl of “Entertainment Tonight;” sports greats Nadia Comaneci and Tiki Barber; publisher and author Walter Anderson; entertainers Tom Bergeron, Tony Orlando, Norm Crosby and Casey Kasem.

Singing sensation Billy Gilman, 20, serves as MDA National Youth Chairman.

And then there’s MDA’s number-one volunteer for more than 50 years. Despite battling debilitating pulmonary fibrosis, severe back pain and heart surgery in recent years, MDA National Chairman Jerry Lewis has never missed a Telethon.

Corporate and Community Involvement

Many organizations and businesses support MDA through fundraising events year-round. From the high school marketing club DECA and the International Association of Fire Fighters, to such corporate friends as Harley-Davidson Motor Co. and CITGO, representatives from MDA’s national sponsors appear on the Telethon to present Jerry with their contributions.

MDA and its Telethon also depend on the solid support of a network of some 2 million volunteers nationwide. Anyone wishing to take part in the fight against muscular dystrophy and related diseases is welcome to join MDA’s crusade.

For information on how to help MDA as a volunteer or sponsor, call (800) 572-1717. To learn about MDA online, visit MDA’s Web site at www.mda.org. You also can visit MDA’s site devoted exclusively to ALS at www.als-mda.org, or its Spanish-language site at www.mdaenespanol.org.