TELETHON TO PROFILE FIVE HEROES
Perhaps the most dramatic moments of the MDA Telethon come when the viewing
audience meets the true heroes taking part in MDA's mission — the families and
individuals who live with neuromuscular diseases every day.
When viewers can put names and human faces to disease names, like amyotrophic
lateral sclerosis, mitochondrial myopathy or Duchenne muscular dystrophy,
that's when the phones start to ring.
This year's Telethon will deliver its share of poignant and inspiring stories of
everyday heroes in virtually every community, via videotape and personal
interviews. Here's a preview of those who'll be profiled on the national
broadcast:
A Boy Named Mattie
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Mattie and Jeni Stepanek at their home |
One of the most powerful segments of last year's Telethon came in the final hour
when America was introduced to a remarkable young man named Mattie Stepanek.
And what a difference a year has made for the boy who was later named MDA's
National Goodwill Ambassador for 2002.
Mattie, 12, followed his appearance on last year's Telethon with appearances on
"The Oprah Winfrey Show," "Larry King Live," "Good Morning America" and in a
host of other national broadcast and print media. He's just published his
fourth poetry collection — the first three were best-sellers — and has talked
about peace with President Carter.
Not bad for a guy who nearly lost his life to mitochondrial myopathy just over a
year ago.
"I want to travel the world and teach peace through my poetry," he says. "I want
the world to understand that we need to stop fighting over little things like
land and money, or things that God doesn't really want us to argue about, like
religion."
And when he's finished bringing world peace?
"I also want to be a daddy one day."
‘Lou Gehrig and Me'
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Asa Baber |
On June 19, 1936, the day Chicago's Asa Baber was born, legendary New York
Yankees' first baseman Lou Gehrig celebrated his 33rd birthday. That year
Gehrig had one of his best seasons, finishing with a .354 batting average, 49
home runs, 167 runs scored and 152 runs batted in.
On July 4 just three years later, Gehrig was forced to leave the game because of
the ravages of ALS. By the time Asa Baber celebrated his fifth birthday,
baseball's "Iron Horse" was gone.
Today, Baber, who writes a column called "Men" for Playboy, is battling the same
disease that took Lou Gehrig's life. In a recent column, from which Baber will
read excerpts for the Telethon audience, he told his readers about having Lou
Gehrig's disease:
"I am now confronting the many problems ALS presents, and I know that things
will become more difficult for me as the disease progresses. How long it will
take is beyond my powers of prediction, but I am ready for whatever comes my
way."
Keeping a Sense of Humor
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Steven Bishop and family |
Steven Bishop, 36, also has ALS. And while the disease is slowly destroying his
body, this husband and father from Arvada, Colo., has refused to let it reach
his spirit, or his sense of humor.
It's an attitude that he and his wife, Jennifer, try to impart to others, as
they coordinate an MDA ALS support group.
"They see that we're upbeat and still have a great sense of humor about it," he
says. "I think all of that is extremely important."
Bishop thinks MDA and the Telethon are important, too.
"MDA does a lot of things for me," he relates. "We want [people] to understand
that they're not just giving to an organization. We want them to know how it's
affecting the people that they're giving to."
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Chris Johnson |
'I Want to Find a Cure for Everybody'
As MDA's Tennessee Goodwill Ambassador, Chris Johnson of Chat-tanooga
understands the importance of raising the money needed to continue the
Association's nationwide network of clinics and worldwide research effort.
Johnson, 12, has Duchenne muscular dystrophy. He still walks, with the help of
psychedelically colored leg braces, and also uses an electric scooter for
mobility.
What he really wants to talk about is MDA summer camp. "I like to swim a lot and
dance and do all the activities they have up there to do," he says.
Johnson takes his responsibilities as an MDA state ambassador very seriously.
"It's important because I want to find a cure for everybody," he says. He also
dreams that the day will come when "I can walk again without braces, and run.
That'd be cool to do."
Houston Artist Emphasizes Family
Gerardo Jimenez, 26, still lives at home with his family in Houston — not
because he's a "starving artist," but because he has Duchenne muscular
dystrophy.
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Gerardo Jimenez |
Jimenez' story is about more than just Gerardo, his art and DMD. It's the story
of how an entire family pulls together to help overcome the obstacles created
by his disease.
"My family is very important to me," Jimenez explains. "They help me in
everything, in all my physical needs — and to be a good person."
Jimenez also talks about the artwork he's donated to the nationally renowned MDA
Art Collection.
"I feel really happy when I finish a drawing," he says. "When I received Quest
magazine, I found my drawing of the Batman in there [vol.
8, no. 6], and it made me very happy."
Jimenez then explains the importance of the Telethon:
"It's important for people to donate to MDA, so they have enough money to have
research to find a cure for MD."
The 2002 Jerry Lewis MDA Telethon will air Sept. 1-2. Check local listings for
the "Love Network" station nearest you, or watch the Telethon on the World Wide
Web at www.mda.org. |