The Peacemaker's
Journey |
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It’s been more than two years since best-selling poet, peacemaker and MDA National Goodwill
Ambassador Mattie Stepanek died, but his message of hope and peace continues to make inroads. Mattie’s
latest vehicle is a motorcycle.
The Peacemaker Bike is the brainchild of entrepreneur and philanthropist Lynn Jones,
owner of Lynnco Custom Cycles in Cleveland, Tenn. After Jones learned about Mattie’s story from members of the International
Association of Fire Fighters (IAFF), he created the Peacemaker Bike to honor Mattie’s legacy, and to help spread the word about
MDA.
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Jeni Stepanek checks out the Peacemaker Bike.
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Friend and local fire fighter Dennis Carroll gave Jones Mattie’s first book, Heartsongs, and told him about Mattie’s special bond with IAFF General Presi-dent Harold Schaitberger. Halfway through the book, Jones said,
“This is it,” and immediately organized a meeting with Schaitberger and Jeni Stepanek, Mattie’s mom. (IAFF is MDA’s largest national sponsor.)
Jones, who created his motorcycle business and the Lynn Jones Foundation
in 2005, builds custom cycles for international competitions and to benefit charities.
After Jeni named the Peacemaker, Jones went to work with designer Cyril
Huze and painter Chris Cruz; they completed the custom bike in five months. During the process, Jones sent
drawings and photographs to Jeni, keeping her apprised of the bike’s progress.
The Peacemaker’s design elements illustrate Mattie’s life, including his
love of writing and art. The bike was painted blue because the color epitomizes Mattie’s life philosophy,
“Remember to play after every storm,” Jones said.
The Peacemaker, unveiled Feb. 25 at the MDA Heartsongs Gala in Washington, D.C.,
is touring the country to bring a greater awareness to the fight against neuromuscular diseases.
The bike has made several appearances during Jeni Stepanek’s book-signing tour to
promote Mattie’s final book, Just Peace: A Message of Hope. In May, Schaitberger presented the Peacemaker Bike at the
Harley-Davidson Ride for Life in Reading, Pa., and will bring it to IAFF’s national convention in Toronto Aug. 28-Sept. 1.
“Mattie’s battle to survive and his will to defeat muscular dystrophy made him an exceptional friend of the IAFF,”
Schaitberger said. “His life made us proud, and we honor his vision of hope and peace with this special bike.”
The Peacemaker will be auctioned off on eBay, with all proceeds benefiting the MDA Mattie Fund, which supports
MDA research on childhood neuromuscular diseases. Mattie died of mitochondrial myopathy in June 2004 at age 13.
The online auction will begin Sept. 1 and run through Dec. 15. Many entertainers, actors, fashion
designers and athletes already have autographed the bike.
For more information about the Peacemaker Bike, visit www.peacemakerbike.com. |
Summer Is Time for
Smiling in the Aisles and Filling Boots
The International Association of Fire Fighters’ Fill-the-Boot campaign for
MDA gets under way in the summer. Members of hundreds of IAFF locals will invite the public at intersections,
malls and sporting events to fill a fire fighter’s boot with donations for MDA.
Recently, Houston Local 341 conducted a four-day Fill-the-Boot drive, which raised a record
$510,000 — the single largest Fill-the-Boot effort in MDA history.
Since 1954, the fire fighters have raised
approximately $275 million for MDA’s lifesaving research and services. IAFF is MDA’s largest
sponsor.
Grocery stores and other retailers are
turning their stores into Aisles of Smiles to benefit MDA this
summer. As consumers purchase products or buy mobiles with the
Aisles logo, participating manufacturers guarantee a donation to MDA
from every marked product that’s sold.
This year, Southeastern giant Winn-Dixie,
with 700 retail locations, has joined the campaign to bring smiles
to “Jerry’s kids.” In 2005, the in-store Aisles of Smiles campaign
and special events, involving more than 120 retail chains and
outlets, raised more than $8.3 million for MDA’s programs.
Watch for the program logo in your
supermarket aisles. |
Thanks for Your Support ... Motors
Running...
More than 2,000 motorcycles took off
with a roar May 6 in the 19th annual Harley-Davidson Ride for Life in
Pennsylvania. They returned with an impressive $843,842 for MDA.
Under sponsorship of the Eastern
Harley-Davidson Dealers Association, motorcycle enthusiasts,
Harley-Davidson dealers and area businesses in five mid-Atlantic states
collected contributions.
Harold Schaitberger,
general president of the International Association of Fire Fighters
(IAFF), led a contingent of fire fighters in the ride. The Peacemaker Bike
was on display (see “The Peacemaker’s Journey” ), and MDA National Youth Chairman Billy Gilman
wowed the crowd at the Ride for Life Appreciation Party.
MDA’s partnership with Harley-Davidson
began in 1980. Since then, Harley-Davidson dealers, customers, employees,
suppliers and H.O.G. (Harley Owners Group) chapters have raised more than
$50 million for “Jerry’s kids .”
Dancing Under the Stars
Another major annual MDA event, A Night
Under the Stars, brought in $565,000 for ALS research and MDA summer camp.
The Emerald Ball held April 22 at The Beverly Hilton in Beverly Hills,
Calif., drew some 700 guests.
Event chairman and MDA Board member
Timmi Masters organized the 20th annual Los Angeles event, which was
pre-sented by MDA national sponsor Albertsons.
The Telethon was broadcast from Las
Vegas for several years before moving to CBS’s Television City in Los
Angeles in 1995. Last year’s Telethon originated at The Beverly Hilton in
Beverly Hills, Calif.
Hosted by Tom Bergeron of ABC’s “Dancing
with the Stars,” the black-tie evening honored Timmi and John Masters with
the 2006 Golden Wings Award. The Humanitarian Award was presented to C.
Randolph Fishburn of the New York office of the White & Case law firm.
Matt Plaskoff, founder of Plaskoff Construction and One Week Bath, both of
Tarzana, Calif., received the Award of Distinction. The SuperNova Award
went to entertainer Lainie Kazan.
The Albertsons Courage Award was given
to Alexis Villa, 10, of Pico Rivera, Calif., who served as MDA Goodwill
Ambassador for California in 2003 and 2004.
Fazzino Donates 5 More
3-D Artwork Pieces
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Fazzino and kids created "Summer Camp in the City" at a 1999 MDA-sponsored camp in Center Moriches, N.Y.
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Renowned 3-D pop artist and MDA National Vice President
Charles Fazzino has donated five new pieces of artwork to be used as auction items at MDA fund-raisers
nationwide.
Fazzino, known as the creator of three-dimensional
silkscreen serigraphs, has donated 45 pieces to the Association since 1999. His work is bright,
whimsical and hand-assembled in layers for a 3-D effect. |
Memphis Is Site of Newest MDA/ALS
Center
MDA’s ALS Division has designated the
Baptist Memorial Hospital in Memphis, Tenn., as the site of its 37th
MDA/ALS center. The center’s director is Tulio Bertorini, a professor in
the Departments of Neurology and Pathology at the University of Tennessee
Health Science Center in Memphis. Bertorini is the longtime director of
MDA’s clinic at the hospital.
MDA/ALS centers focus on treatment of people with
amyotrophic lateral sclerosis.
MDA Publications Receive National
Awards
Quest and other MDA publications have
been honored in two national competitions.
The May-June 2005 issue of
Quest received an Award of Distinction in the Magazine/Association
category of the Communicator Awards, and a pair of stories on service dogs
from the July-August 2005 Quest earned an Honorable
Mention citation in the Writing/Feature category. The stories were by
staff writer Kathy Wechsler and freelancer Jan Blaustone.
“A Teacher’s Guide to
Neuromuscular Diseases” received the competition’s highest honor, an Award
of Excellence, in the Brochure by a Nonprofit category. An Award of
Distinction also went to the February 2005 issue of the MDA/ALS
Newsmagazine.
In addition, Everyday Life With ALS: A Practical Guide, a book-length project released in 2005, received
a bronze award from the Society of National Association Publications in
the Special Publications — Books category.
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