The 2004 Telethon will follow the same guiding principles. Yet
this years show, the keystone of MDA's annual fund-raising efforts,
will also be highlighted by some very special tributes.
MOTIVATION
The show will be dedicated to the late Mattie Stepanek, MDA's
2004 National Goodwill Ambassador, who died at age 13 in June
from the effects of mitochondrial myopathy. (See "Mattie".)
The Telethon will convey through videotapes, commentary and an
appearance by Mattie's mother, Jeni Stepanek, how the young man
touched people around the world with his poetry and philosophy,
and how he spread the word about MDA and its mission.
"There's a hole in my heart now that Mattie's gone,"
said Jerry Lewis, MDA National Chairman and Telethon star.
"It's fitting that we celebrate his remarkable life, but
I also want Telethon viewers to understand that Mattie is one
of thousands of children and adults whose lives have been
dramatically altered or cut short by neuromuscular diseases,"
Lewis said.
Other special Telethon segments will pay tribute to the International
Association of Fire Fighters, a labor union that's partnered with
MDA for 50 years.
Nationwide, IAFF members volunteer at MDA summer camp, and hold
special MDA events such as Fill-the-Boot. As MDA's largest national
sponsor, the IAFF has raised more than $200 million for "Jerrys
kids" since 1954.
The tributes to Mattie and the IAFF will intertwine. Mattie was
long involved with fire fighter projects in the Washington area
and was a close friend of IAFF General President Harold Schaitberger.
EDUCATION
Videotaped profiles of families served by MDA will, as always,
be an important part of the show.
Returning after last year's Telethon broadcast are Christopher and Reda Rice, co-chairpersons of MDA's ALS Division (Houston,
Lou Gehrig's disease), and Morgan Fritz, a 5-year old (St.
Louis, spinal muscular atrophy).
The Rices have spent the year representing MDA and people with
ALS, through print and televised public service announcements,
media appearances and major events.
Morgan and her family parents Ron and Susan, and siblings Madilynn,
8, and Austin, 3 will also be part of the fire fighter tributes.
Ron Fritz, an IAFF member, is a fire fighter and paramedic for
the Normandy Fire Department in Missouri.
Also returning from last year's Telethon are Shane Bourque,
12 (Warwick, R.I., Becker muscular dystrophy), and Erin Kiernan,
15 (Mt. Airy, Md., Friedreich's ataxia), and their families.
Pulitzer Prize-winning photojournalist Eddie Adams, who
recently received a diagnosis of ALS, will be featured during
a Parade magazine segment.
Adams' career spans more than 40 years. He's best-known for his
coverage of the war in Vietnam, where he accompanied American
and Vietnamese troops in 150 operations.
Adams, 71, is a special correspondent for Parade magazine, and
has taken many memorable cover photos of Jerry Lewis and people
served by MDA for the magazine's Telethon coverage. In a taped
profile, Adams' wife, Alyssa, and son, August, will detail the
family's struggle with the disease that has already taken Adams'
ability to speak.
Corbin Brey (Milwaukee, Duchenne muscular dystrophy),
an outgoing 13-year-old who enjoys playing guitar, singing, writing,
movies and computers, will be profiled.
Corbin is MDA's 2004 Wisconsin State Goodwill Ambassador; participates
in school activities like art club and honor choir; and is a school
yearbook photographer.
Don't be surprised if he snags the microphone from Jerry Lewis,
since Corbin served as co-anchor of his local Telethon broadcast
in 2003.
Another 13-year-old, Ivan Garcia (Miami, Duchenne MD),
is an avid sports fan who wants to be a baseball announcer for
the Florida Marlins when he grows up.
Ivan has appeared on the Miami broadcast of the Telethon since
2000. His profile will be presented in both English and Spanish.
Ivan and his parents, Robert and Millie, will talk about the
many ways in which Duchenne has affected their lives, and about
MDA's assistance through services such as MDA summer camp.
Natalie Lomske (Northville, Mich., congenital muscular
dystrophy) is a 10-year-old who participates in Girl Scouts, swimming,
therapeutic horseback riding and wheelchair hockey.
She and her parents, Steven and Cecile, regularly attend many
MDA events, and she serves as MDA's 2004 Michigan State Goodwill
Ambassador.
Additional Telethon segments will highlight MDA's research achievements,
with interviews with world-renowned scientists and doctors who
are MDA grantees.
ENTERTAINMENT
Lewis, who's eager to be at the Telethon helm after a year filled
with his own health problems, will be joined on stage by a familiar
cast of celebrities.
Ed McMahon, a member of MDA's Board of Directors, will return
for his 37th year as Telethon anchor.
Co-hosts will again be Jann Carl, "Entertainment Tonight"
correspondent and weekend anchor, also an MDA director; television
personality Cynthia Garrett, an MDA national vice president; and
Norm Crosby, comedian and MDA national vice president.
Teen singing sensation Billy Gilman, who is MDA's national youth
chairman, will host special youth segments.
The Telethon will also include some of the country's finest up-and-coming
talent, performers discovered in MDA's Stars Across America talent
search.
Add a line-up of top stars, and it will be another unforgettable
Telethon.
