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Telethon History
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 Muscular Dystrophy Association.

First broadcast over Labor Day weekend in 1966 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's drama comes from the ever-increasing fundraising total posted on the tote board - by hand in 1966, now electronically. Jerry's goal of raising "one dollar more" than the previous year's amount 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 some 40 million viewers in North America and countless others worldwide on the Internet.

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

Where Telethon Dollars Go

The Telethon is the single most important fundraising event of the year for MDA. Funds raised help the Association carry on its fight against more than 40 neuromuscular 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 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

The battle against neuromuscular diseases has resulted in increased life expectancy, improved quality of life and scores of research milestones, bringing closer the goal of cures or effective treatments for many of the diseases in MDA's program. In its current fiscal year MDA has devoted more than $33.6 million to research alone.

The Telethon carries information about MDA's research efforts and features interviews with top scientists. Among advances in the past year, MDA-supported researchers have:

  • Joined with the world’s leading Duchenne muscular dystrophy organizations to launch a coalition called the Duchenne Research Collaborative International (DRCI) that will pool knowledge and resources;
  • Launched, along with the ALS Therapy Development Institute in Cambridge, Mass., the largest drug discovery project for amyotrophic lateral sclerosis in history. The three-year, $36 million endeavor will attempt to identify biochemical targets and find drugs that work on them;
  • Scanned the entire human genome revealing more than 50 genetic differences between 1,200 people with and 2,000 people without sporadic amyotrophic lateral sclerosis. The Translational Genomics Research Institute (TGen) in Phoenix used cutting-edge technology to complete the scan rapidly;
  • Received FDA approval for Myozyme, a laboratory-engineered enzyme patented by Genzyme and developed in part with basic research funded by MDA. The drug is approved for use in children and adults with acid maltase deficiency (Pompe’s disease). It replaces the missing enzyme in this metabolic muscle disease;
  • Started the first U.S. human gene therapy trial directed at Duchenne muscular dystrophy, with the support of a $1.6 million grant. Six boys with DMD received an injection in one arm of genes for dystrophin, the missing protein in DMD, and a placebo in the other arm. The scientists will measure dystrophin production and monitor the effects of the gene transfer on the children;
  • Found that weekly injections of “antisense” molecules into a vein in dystrophin-deficient mice restored production levels of this protein to 50 percent of normal in some muscles. The antisense constructs block erroneous genetic instructions that prevent the production of dystrophin, a protein missing in Duchenne muscular dystrophy and inadequate in Becker MD;
  • Identified variations in and around genes known as PONs, whose normal role is to detoxify poisons such as pesticides and nerve gas, as risk factors for developing amyotrophic lateral sclerosis. The finding may help explain why Gulf War veterans have a higher than normal rate of ALS development and why occupational clusters of ALS (Lou Gehrig's disease) have occasionally been identified;
  • Discovered that several drugs and some molecular strategies have shown that cells affected by spinal muscular atrophy can be taught to make the missing protein, SMN. One strategy involves blocking the genetic instructions that prevent full-length SMN protein production, while causing molecules essential to SMN synthesis to join the process;
  • Found that an overabundance of a protein known as FRG1 is a likely factor in facioscapulohumeral muscular dystrophy. The genetic cause of the disease is a deletion of a small stretch of chromosome 4 DNA, but since the deleted DNA contains no actual genes, the downstream effects of the problem have remained uncertain. The finding suggests that reducing or blocking FRG1 might be helpful.

In addition, MDA collaborates with the National Institutes of Health (NIH) at three national "centers of excellence" which act as hubs of basic and applied muscular dystrophy research.

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 MDA's Board members are Ed McMahon, longtime Telethon anchor; 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 Telethon co-host Jann Carl of "Entertainment Tonight," sports greats Nadia Comaneci, Michael Strahan and Ben Davidson; publisher and author Walter Anderson; entertainers Tony Orlando, Norm Crosby and Casey Kasem; and renowned heart surgeon Dr. Michael E. DeBakey.

Singing sensation Billy Gilman, 19, 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 a heart attack 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 more than 250,000 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.

 
 
     
     
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