The world’s best-selling teenage poet, Mattie Stepanek, will be featured on the national broadcast of the Jerry Lewis Telethon for the Muscular Dystrophy Association on Labor Day weekend.
Mattie, 13, and his mother, Jeni Stepanek, both of Baltimore, are the subjects of a videotaped profile that will be aired nationwide on the Aug. 31–Sept. 1 Telethon. Mattie and Jeni are also scheduled to appear on the show.
The 38th annual MDA Telethon airs for 21½ hours beginning at 9 p.m. EDT on Sunday, Aug. 31. The show originates from CBS Television City in Hollywood and will be broadcast by some 200 “Love Network” stations nationwide, including KTRE-TV 9, Lufkin/Nacogdoches. The Telethon can also be seen on MDA’s Web site, www.mdausa.org, via streaming video provided by RealNetworks.
As MDA’s National Goodwill Ambassador, Mattie represents families served by MDA at conferences, sponsor gatherings and other events across the country, and in media and promotional materials.
“I’m thrilled to be teaming up again with Mattie and Jeni. They have such a beautiful way of sharing MDA’s message,” said Jerry Lewis, MDA national chairman and Telethon star. “I know their story will touch the hearts of many viewers, and motivate them to support MDA’s mission to wipe out neuromuscular diseases.”
In the profile, the Stepaneks discuss the challenges of living with a neuromuscular disease, and Mattie’s amazing journey to fame with the success of his poetry books.
Mattie’s fifth book, Loving Through Heartsongs, was published this year. During the past two years, Mattie’s been interviewed extensively by the national media, held book-signing events across the country, and become friends with famous people like Jimmy Carter and Oprah Winfrey.
Mattie has mitochondrial myopathy, a rare neuromuscular disease that causes generalized muscle weakness, breathing and heart problems. His mother has the adult form of the disease, which took the lives of three of her children in early childhood. Mattie uses a power wheelchair for mobility, and a respirator for breathing assistance.
MDA is a voluntary health organization working to defeat more than 40 neuromuscular disease through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. MDA maintains a network of 230 clinics serving children and adults affected by neuromuscular diseases.
— Adapted from the Muscular Dystrophy Association 2003 Digital Media Kit