MDA DEDICATES TELETHON
TO NOTED YOUNG POET

TUCSON, Ariz., July 19, 2004 — The 2004 Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Association will be dedicated to MDA’s 13-year-old National Goodwill Ambassador who died in June.

Mattie J.T. Stepanek of Rockville, Md., died June 22 from complications associated with his rare neuromuscular disease, mitochondrial myopathy.

Mattie was also the best-selling author of five books of poetry, a peace advocate who was co-authoring a book with former President Jimmy Carter, and a longtime spokesperson for MDA.

MDA’s 39th annual Telethon, to be aired Sept. 5-6, will honor Mattie with videotaped tributes throughout the broadcast.

Mattie’s mother, Jeni Stepanek of Rockville, Md., is scheduled to deliver a message on the Telethon. She also has mitochondrial myopathy and lost three other children to the disease before her diagnosis.

“Mattie was an amazing youngster,” MDA National Chairman Jerry Lewis said. “He touched many people’s hearts — mine included — in his short lifetime, which was devoted to helping others and spreading peace and love. It’s absolutely fitting that this year’s Telethon turn to him as inspiration in our fight against deadly neuromuscular diseases.”

As MDA’s National Goodwill Ambassador since 2002, Mattie represented families served by the Association at fund-raisers, sponsor gatherings and media events across the country. He also appeared in MDA public service announcements and program materials.

Mattie made three appearances on the national broadcast of the Telethon (two by satellite from the Baltimore area where he lived), and he and Lewis became fast friends.

Singer Billy Gilman, who serves as MDA’s National Youth Chairman, also developed a close friendship with the young poet and recorded an album of songs based on Mattie’s poems. Gilman will also be on this year’s Telethon.

Another of Mattie’s strong relationships was with International Association of Fire Fighters General President Harold Schaitberger. Members of the IAFF, MDA’s largest sponsor, treated Mattie as one of their own. Fire fighters and paramedics participated in Mattie’s funeral and a fire truck took his body from the church to the cemetery.

The Telethon will run for 21½ hours starting at 9 p.m. EDT Sept. 5. Originating at CBS Television City in Hollywood, the broadcast will be seen on some 200 MDA “Love Network” stations and also online at www.mda.org.

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.