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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