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

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'

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

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."

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.

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.