TEEN POET TO SERVE RARE
THIRD TERM AS MDA AMBASSADOR

TUCSON, Ariz., Oct. 6, 2003 — One of the world’s most remarkable teenagers, Mattie J.T. Stepanek, has agreed to serve a rare third term as National Goodwill Ambassador for the Muscular Dystrophy Association.

Mattie, who lives in a Maryland suburb of Washington with his mother, Jeni, is a best-selling poet who’s also widely known for his passionate efforts at promoting peace and tolerance.

Although MDA’s national ambassadors usually hold office for just one or two years, MDA officials were so delighted with Mattie’s service to MDA for the past two years that they asked him to retain the title in 2004. He’ll become only the second youngster to serve three terms and the first to do so in almost 40 years.

“Oh my gosh! This is amazing! This is awesome! I’m really surprised and honored,” was Mattie’s enthusiastic response.

Mattie, 13, and Jeni both have a rare disease related to muscular dystrophy called mitochondrial myopathy. The disease took the lives of Mattie’s three siblings.

“The words ‘amazing’ and ‘outstanding’ aren’t enough to describe Mattie and the tremendous pride I feel to be his teammate in MDA’s fight,” MDA National Chairman Jerry Lewis said. “We’re deeply grateful that this wise and gifted young man has agreed to continue his terrific and very effective work for MDA.”

Mattie is eager to continue spreading the word about MDA’s mission, and to again represent MDA at special events and fund-raisers, as his health permits.

“I love doing stuff for MDA and am glad that I can continue to help,” Mattie said.

His planned activities in 2003 were reduced by a four-month-long hospital stay in the spring due to respiratory and other health complications caused by his disease. His overall health remains fragile, and he requires weekly platelet transfusions on an outpatient basis.
Despite that setback, he took part in many local and national MDA events, including appearing via satellite from Baltimore on the 2003 Jerry Lewis MDA Telethon.

A poet since age 3, Mattie is the best-selling author of five books of poetry ("Heartsongs," "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and “Loving Through Heartsongs” published by Hyperion in 2001, 2002 and 2003).

In 2003, he collaborated with another outstanding teen, 15-year-old singer Billy Gilman, on the CD “Music Through Heartsongs.” Gilman is MDA’s National Youth Chairman.

In addition to MDA events, Mattie’s upcoming schedule includes book signings at Maryland bookstores in November, and one at the Kennedy Center in Washington on Dec. 20.

He’ll also be a featured speaker at several special events on the East Coast, and is collaborating with President Jimmy Carter on a book about peacemaking.

Mattie's neuromuscular disease disrupts his body's autonomic functions, such as breathing, oxygen use and digestion. He uses a power wheelchair and ventilator.

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

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