MDA Matters Summer 2009

by Quest Staff on July 1, 2009 - 4:41pm

QUEST Vol. 16, No. 3

Featured in this article: Jerry Lewis inducted into New Jersey Hall of Fame ** myMDA is MDA's new online community ** Telethon 2008 DVD available ** New books by celebrities Nancy O'Dell, Tom Bergeron ** News about MDA National Goodwill Ambassadors Luke Christie, Ben Cumbo, Lauren Carter, Mattie Stepanek.

Jerry Lewis inducted into New Jersey Hall of Fame

On May 3, MDA National Chairman Jerry Lewis was among 13 prominent Americans honored by induction into the New Jersey Hall of Fame. The institution recognizes New Jersey natives and others with an affinity for the state who have achieved renown in such categories as arts and entertainment, sports, enterprise and others.

New Jersey Governor Jon Corzine said, “This group of Hall of Famers embodies the spirit of New Jersey, a combination of drive, determination and creativity that has led them to greatness.” Lewis was born in Newark in 1926, and went on to become an actor, comedian, singer, director, producer, inventor and advocate for people with muscle diseases.

Other entertainment giants who joined Lewis as Hall of Fame 2009 inductees included Bud Abbott and Lou Costello, and Jon Bon Jovi. Representing other categories were basketball great Shaquille O’Neal, writer F. Scott Fitzgerald, communications pioneer Guglielmo Marconi, scientist Carl Sagan and poet Walt Whitman. Previous honorees have included Albert Einstein, Frank Sinatra, Yogi Berra and Buzz Aldrin.

New MDA online community proves very popular

In April, MDA launched an online community, myMDA, where people affected by neuromuscular diseases can socialize and exchange information. Organized under the motto “Strength in Community,” myMDA members are people with muscle diseases, caregivers, volunteers, fundraisers, advocates, clinicians, researchers and MDA staff.

Features of the site include video and text messaging, video and text blogging, message boards and forums, photo and music video sharing, and chat rooms. Within two weeks of its launch, more than 1,500 individuals and 43 groups had registered on the site. Local MDA offices also have a presence. Groups, such as the Duchenne muscular dystrophy community and MDA summer camp community, offer a place to meet others with similar interests and concerns. The myStory section lets people describe their personal experiences with neuromuscular disease. Join the community! Registration is free and open to those 18 or older. Go to to register.

Highlights of 2008 Telethon available on DVD

Every year, some of the top entertainers in the world appear on the Jerry Lewis MDA Labor Day Telethon, helping raise funds for the Muscular Dystrophy Association. By popular demand, select performances from the 2008 Telethon are now available on a new compilation DVD, “The Best of 2008 Jerry Lewis MDA Telethon.”

The new Telethon DVD features nearly 30 performances by a wide range of popular entertainers and musicians, including Jerry Lewis, Ace Young, Billy Gilman, Gloria Gaynor, Jack Jones, Maureen McGovern, Menudo, Neil Sedaka, Norm Crosby, ventriloquist Terry Fator, Tony Orlando, Tracy Lawrence, comedian George Wallace, Jimmy Wayne, Joshua Bell, Pat Monahan and Train, and Starship featuring Mickey Thomas — among many others.

Familiar celebrities are authors, too

Two television celebrities who give of their time to MDA also have new books on the market.

Nancy O’Dell: The host of TV’s “Access Hollywood,” MDA’s new ALS Ambassador and Telethon co-host Nancy O’Dell has written Full of Life: Mom to Mom Tips I Wish Someone Had Told Me When I Was Pregnant (Simon & Schuster). With warmth and humor, O’Dell candidly talks of her experiences in each stage of expectant motherhood, from pre-conception through delivery, and describes the intimidating but joyful first week at home with the new baby.

Tom Bergeron: Also a Telethon co-host, Tom Bergeron hosts television’s “Dancing with the Stars” and “America’s Funniest Home Videos.” Somehow he also has found time to pen I’m Hosting as Fast as I Can (HarperCollins Publishers). Although Bergeron is the picture of calm and cool on stage and on camera, his book describes (often hilariously) the incredible amount of motivation, inspiration and perseverance that was needed to achieve his unruffled demeanor.

Former MDA National Goodwill Ambassadors still excelling

Luke Christie
Luke Christie

MDA National Goodwill Ambassadors don’t stop being creative, talented, ambitious and caring when their terms of duty are over. Here are updates on the doings of a few former goodwill ambassadors:

Luke Christie, 2006, 2007: Christie, 15, of Due West, S.C., is an active member of Future Business Leaders of America, and recently was appointed to be the South Carolina representative to the national organization. In FBLA’s statewide competition, Christie took first place in the job interview competition, and will participate in the national FBLA competition this summer. The energetic teen, who has spinal muscular atrophy, is the MDA National Youth Chairman, replacing singer Billy Gilman in this role.

Ben Cumbo and President Obama
Ben Cumbo with President Obama

Ben Cumbo, 1996, 1997: Cumbo, who turned 22 in July, graduated from St. Mary’s College in Maryland this spring with a major in sociology and a minor in religious studies, and plans to pursue graduate work in religious studies. Cumbo, who has Duchenne muscular dystrophy, has written a book King Me (Trafford Publishing, 2007), and in 2007 worked as an intern for then-Senator Barack Obama.

Lauren Carter photo: Bryn-Alan

Lauren Carter, 2000: Carter, who turned 18 in July, graduated in May from Morton Ranch High School in Katy, Texas. Carter was not only an honor student; she also was official chief of committees for her National Honor Society chapter; a vice president in Best Buddies, an international group that helps people with intellectual disabilities; and a teacher of a kindergarten Bible class. After a recent visit to Paris, Carter is now considering attending college there. She has spinal muscular atrophy.

Mattie J.T. Stepanek, 2002-2004: Stepanek died in 2004, at age 13, due to the effects of dysautonomic mitochondrial myopathy. But his spirit continues to have an effect on the world. His six “Heartsongs” poetry books, and a book of essays on peace that was published posthumously, have sold more than two million copies combined, and his message of peace continues to inspire peace efforts.

Mattie Stepanek

Now Mattie’s mother, Jeni Stepanek, has inked an agreement with Dutton publishers to write the story of her son’s remarkable life, which included many highs and lows, poverty and celebrity, close calls and not a few miracles.

Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs will include previously unpublished photos, poetry, essays and e-mail correspondence with such influential friends as Oprah Winfrey and former President Jimmy Carter. The book, due to be released in November, will have a foreword by Maya Angelou.

“Not a day goes by when I don’t receive e-mails and letters saying that Mattie’s poetry and speeches are not enough — people want to know about him directly and intimately,” Stepanek said.

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