MDA TV SPECIAL TO HONOR LATE TEEN POET
TUCSON, Ariz., Aug. 4, 2005 — It’s been over a year since
best-selling poet and Muscular Dystrophy Association National Goodwill
Ambassador Mattie J.T. Stepanek died from a rare neuromuscular disease.
To honor Mattie’s enduring message of peace and hope, MDA has
produced a television special about his short yet remarkable life.
The 30-minute special, “Play After Every Storm: Remembering Mattie
Stepanek,” was taped at MDA’s National Headquarters in Tucson.
It features Mattie’s mother, Jeni Stepanek, and good friend Jann
Carl, a correspondent and weekend anchor for “Entertainment Tonight.”
The special will be broadcast on MDA “Love Network” stations
across the country during the weeks before the Jerry Lewis MDA Telethon
on Sept. 4-5. Emmy-winner Carl, who serves on MDA’s Board of Directors,
is the host.
The show’s title is based on Mattie’s life philosophy, “Remember
to play after every storm.” Mattie wrote, “You go through
many hard things in life but if you are confident, you’ll get
through it. Always remember to celebrate because that is what charges
you up to get through another life storm.”
Mattie died on June 22, 2004, just shy of his 14th birthday, in the
midst of his third term as MDA’s National Goodwill Ambassador.
In the past year, Jeni Stepanek has honored her promise to carry forward
her son’s message and his work for MDA. She arranged publication
of Mattie’s sixth and final volume of poetry, Reflections
of a Peacemaker: A Portrait Through Heartsongs, which will be released
on Aug. 23.
Stepanek also finished a second book, Just Peace: A Message of Hope,
a collection of essays and correspondence Mattie wrote with the collaboration
of President Jimmy Carter. The book is set to hit stores in early 2006.
Both books are being published by Andrews McMeel, and a portion of the
proceeds from “Reflections” benefits MDA.
“Even though Mattie’s body has died, it is my hope that
Mattie’s spirit continues to serve as an ambassador for MDA,”
Stepanek said as the show was being taped. “He knew that his role
was to advocate for MDA, reminding people about their gifts of hope,
and funds for equipment, MDA summer camp and research toward cures.”
Stepanek has an adult-onset form of mitochondrial myopathy, the disease
that claimed Mattie and her other three children. In addition to her
duties as an MDA national vice president, she’s an author and
a faculty research associate at the University of Maryland in Baltimore.
The special includes clips of Mattie at various public appearances and
reading some of his poetry.
“Mattie was very clear about the fact that even though the cure
wasn’t found in time for him, that doesn’t mean that we
give up,” Carl said.
Viewers can check local television listings for air dates and times
in August and September.
“Mattie’s life and spirit had an immeasurably powerful impact
on all of us at MDA, as well as on everyone who came to know him through
his poetry and his memorable television appearances,” MDA President
& CEO Robert Ross said. “Mattie was a compelling and unfailingly
optimistic ambassador, not just for MDA, but for the human spirit.”
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.
For more information about MDA or the pre-Telethon special, call (800)
FIGHT-MD, or visit www.mda.org.
# # # |
