BEST-SELLING POET TO SERVE SECOND YEAR
AS MDA NATIONAL GOODWILL AMBASSADOR

TUCSON, Ariz., Oct. 22, 2002 - The articulate and popular young poet Mattie J.T. Stepanek has enthusiastically accepted an invitation to serve a second year as the national goodwill ambassador for the Muscular Dystrophy Association.

"It's a privilege!" says Mattie, 12, who lives with his mother, Jeni, in a Maryland suburb of Washington, D.C. "I love helping MDA."

Mattie and Jeni both have a rare disease related to muscular dystrophy called mitochondrial myopathy. Mattie is MDA's 2002 National Goodwill Ambassador.

"Mattie's one of the most charismatic youngsters I've ever met, and I'm thrilled and proud to have him representing our cause," MDA National Chairman Jerry Lewis said. "He expresses our message beautifully, and I know he'll move the hearts of millions more Americans next year as he's moved millions this year."

Mattie is the best-selling author of four books of poetry ("Heartsongs," "Journey Through Heartsongs," "Hope Through Heartsongs" and "Celebrate Through Heartsongs," published by Hyperion in 2001 and 2002). A passionate speaker for peace and respect for diversity, as well as for the MDA mission, Mattie has been featured in such national media as "Good Morning America," "The Oprah Winfrey Show," "Larry King Live" and People magazine.

This year, Mattie made live and videotaped appearances before gatherings of such MDA sponsors as Harley-Davidson, CITGO, the International Association of Fire Fighters and the Tall Cedars of Lebanon. In addition, he taped several MDA public service announcements featuring his poetry and a disability awareness educational piece for preschoolers.

He also appeared live on the 2002 Jerry Lewis MDA Labor Day Telethon.

It's really fun, but it's a responsibility too," Mattie says of his MDA ambassadorship. "MDA is such a wonderful cause and every cent makes a difference.

"I want people to know that we're raising money for a cure, but on the way we're all finding ways to keep celebrating life, like MDA summer camp and Christmas parties. We know how to celebrate and keep going."

Mattie especially enjoyed making new friends for MDA across the country, but he said the highlight of the year was appearing on the MDA Telethon with Jerry Lewis and Larry King.

"That was just the best thing," he enthuses. "I'd like to thank everyone who helped me, Jerry Lewis first of all."

Mattie's form of neuromuscular disease, mitochondrial myopathy, disrupts his body's autonomic functions, such as breathing, oxygen use and digestion. The disease took the lives of his three siblings and brought him to the brink of death in 2001.

It was in fulfilling his "final wishes" that his poetry (which he's written since age 3) was published and subsequently rocketed to success. Mattie rallied in August 2001 and was able to leave the hospital, but remains in fragile health.

He uses a power wheelchair and ventilator. Jeni Stepanek, who also uses a power wheelchair, has the milder, adult-onset form of the disease, and wasn't aware she was affected until all four of her children were born.

Mattie says he's looking forward to his second term of spreading the MDA message.
"We can't give up the hope or the optimism," he says. "A cure may not be found in my lifetime or your lifetime, but if we give up and say 'why try?' then it won't be in anyone's lifetime, and that would be horrible."

MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. The Association's programs are funded almost entirely by individual private contributors.