MDA Matters July-August 2006

by Quest Staff on July 1, 2006 - 2:39pm

QUEST Vol. 13, No. 4

The peacemaker's journey

Jeni Stepanek checks out the Peacemaker Bike.
Jeni Stepanek checks out the Peacemaker Bike.

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.

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 President 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.

Peacemaker Bike

“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.


Summer is time for smiling in the aisles and filling boots

A fireman collecting for a Fill-the-Boot drive.

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.

Aisles of Smiles  logo

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.

19th Annual Ride for Life in Pennsylvania

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 presented 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.

Summer Camp in the City
Fazzino and kids created "Summer Camp in the City" at a 1999 MDA-sponsored camp in Center Moriches, N.Y.

Fazzino donates five more 3-D artwork pieces

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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