August 31, 2004

ON CARRYING FORWARD MATTIE’S LEGACY ON TELETHON 2004

Certainly this year’s Jerry Lewis MDA Labor Day Telethon will offer up an exciting array of performing talent. Stars currently slated to appear include Elton John, Celine Dion, Josh Groban and a host of other singers, dancers, comedians and entertainers of every imaginable stripe, from Muppets to magicians, from jugglers to jazz artists.

And yet, Telethon viewers know that some of the most important faces on the broadcast are ones that aren’t necessarily famous, but instead belong to youngsters affected by neuromuscular diseases. These young people, along with their families, appear live or in videotaped segments to talk about waging a daily battle against a progressive muscle disease.

The 2004 Jerry Lewis MDA Labor Day Telethon will air live for 21½ hours starting at 9 p.m. EDT on Sunday, Sept. 5.

Some of the youngsters fighting these disorders who will be seen on the 2004 broadcast are 5-year-old Morgan Fritz from St. Peters, Mo. …13-year-old Ivan Garcia from Miami … 10-year-old Natalie Lomske from Northview, Mich. …. and 13-year-old Corbin Brey from Pewaukee, Wis.

I think you’ll be enchanted, as I have been, by Morgan’s angelic smile… impressed by Ivan’s quiet grace and courage… moved by Corbin’s mature honesty and strength of character… and bowled over by Natalie’s charm and rambunctious laugh. Yet, like me, you may be thinking of another smile, another laugh, belonging to someone who won’t be with us this year.

The all too recent death on June 22 of our beloved 13-year-old MDA National Goodwill Ambassador, Mattie Stepanek, will, despite the overall good spirits of the show, lend some sadness and reflection to our 2004 Jerry Lewis MDA Labor Day Telethon.

How could it not? Since Mattie first came to widespread public attention with the publication of his first best-selling poetry book, “Heartsongs,” in 2001, he’s inspired millions of Americans, who came to know him through that volume and its four sequels and through his lively and engaging appearances on programs like “The Oprah Winfrey Show,” “Good Morning America” and “Larry King Live.”

In 2002, Mattie began to serve the first of three year-long terms in his voluntary role as MDA National Goodwill Ambassador. He performed that role with distinction, dedication and consummate style, even taking into account the constant health setbacks that often landed him in the ICU at Children’s Hospital in Washington for months at a time.

Those close to Mattie know -- despite the excellent care he received -- how demoralizing and frustrating it was for him to be medically sidelined when he was so eager to be out and about and doing things. Tragically, his third term in his national MDA role was cut short in June when he finally lost the battle to the mitochondrial myopathy that had previously taken the lives of his three siblings.

The 2004 Telethon is, suitably enough, dedicated to the memory of this remarkable young poet, peacemaker and champion for MDA.

Strange to remember that it was only three years ago, when, while serving as MDA Goodwill Ambassador for Maryland, Mattie made his first appearance on our national Telethon broadcast, talking to Jerry Lewis, Telethon Anchor Ed McMahon and International Association of Fire Fighters General President Harold Schaitberger during a live satellite linkup from Telethon “Love Network” station WNUV in Baltimore.

	Jeni Stepanek will appear on the 2004 MDA Telethon, which will be dedicated to her late son, Mattie.

The following year, during his first year as National Goodwill Ambassador, Mattie was in stable enough health to travel cross-country with his mom, Jeni, to appear live on the national Telethon broadcast with Jerry.

Mattie’s presence on the set in Hollywood made for a memorable Telethon. Throughout the show, Mattie shared serious thoughts, as well as some jokes, with Jerry, Ed and Telethon guest Larry King. And in the finale, Mattie became the first child in the Telethon’s history to have Jerry’s signature closing tune, “You’ll Never Walk Alone,” sung directly to him.

Behind the scenes, Mattie had a wonderful time, making friends with children from other MDA families who were appearing on the show that year, as well as with the daughter of MDA Board Member and Telethon Co-Host Jann Carl.

In 2003, Mattie’s declining health made another cross-country trip inadvisable, and he once again appeared on the national broadcast via satellite from WNUV, as well as in pretaped video segments.

Which brings us to Telethon 2004. The importance of Mattie to MDA and to the public in general will be acknowledged in tribute segments throughout the show. Some of the friends and admirers who will be paying tribute to Mattie are talk show personality Oprah Winfrey, celebrated poet Maya Angelou, singer and MDA National Youth Chairman Billy Gilman, IAFF General President Harold Schaitberger and Harley-Davidson Motor Company Chairman and CEO Jeff Bleustein.

We’re honored that Jeni Stepanek also will appear several times on the broadcast. Jeni has an adult-onset form of the disease that took the lives of her four children.

Despite this most recent loss of her exquisitely gifted and sensitive son, Jeni is determined to carry on Mattie’s legacy and bring closure to his third term as MDA National Goodwill Ambassador.

With that in mind, she served earlier this month as a speaker at the IAFF’s biennial convention in Boston, a gathering at which Mattie himself had appeared two years previously. Jeni thanked IAFF members for their extraordinary 50 years of dedicated support of MDA.

“Fire fighters were Mattie’s family, his inspiration and his heroes,” Jeni said in her speech. “He had more fire fighter blood in him than Stepanek blood.”

On the Telethon, Jeni will have the opportunity to share her feelings about life with Mattie -- and after Mattie -- and will share some touching footage of Mattie’s memorial service, which was attended by many notables, including Carl, Gilman, Winfrey, Schaitberger and President Jimmy Carter, who delivered Mattie’s eulogy.

How best to carry forward Mattie’s legacy at this most important time in MDA’s year? Remembering Mattie isn’t enough. I think we need to emulate him.

Mattie experienced profound grief and loss, especially over the death of his brother Jamie, which haunted him his whole life but also inspired him to channel his feelings into poetry. He also experienced extreme physical distress from the illness that sent him into comas, made him bleed from the fingertips and stole the breath from his lungs.

But he did not despair.

If many of us, whose problems cannot be said to compare with those of Mattie or other children and adults fighting neuromuscular diseases, could adopt Mattie’s attitude and remember to celebrate life and play after every storm, what could we not accomplish?

It’s a good question as we plunge into our 2004 Telethon, the success of which will be crucial to MDA’s ability to administer its programs in research, medical services and summer camp in the coming year.

Remember, you can make a secure donation to MDA via this Web site at any time prior to, during or after the Telethon broadcast.

Let’s make it the best Telethon ever. We’ll do it in memory of Mattie… and in anticipation of a better, healthier future for Morgan, Ivan, Natalie, Corbin and so many others like them.

With every best wish...

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