MDA Matters January-February 2008

by Quest Staff on January 1, 2008 - 2:40pm

QUEST Vol. 15, No. 1

Featured in this article: Billy Gilman as Youth Chairman ** MDA expands role on Capitol Hill ** Gift funds FSHD research center ** Luke Christie to serve as Harley-Davidson ambassador ** New California law to benefit Fill the Boot ** Shamrocks under way ** MDA writers receive awards ** Singers Bradley Walker, Calvin Ray Johnson honored

Billy Gilman returns as youth leader

Singing sensation Billy Gilman, 19, embarks on a sixth term as National Youth Chairman for the Muscular Dystrophy Association in 2008.

Billy Gilman
Billy Gilman

The youthful virtuoso from Rhode Island pursues a successful singing career while traveling the country to educate thousands of teenagers and young adults about MDA’s battle against neuromuscular diseases.

Gilman performs at MDA national sponsor gatherings such as ERA Real Estate’s International Business Conference and the International Career Development Conference of DECA (an association of marketing students).

He also helps spread MDA’s message of hope through news media interviews and appearances at Association fundraisers. Among the cities on his 2008 tour schedule are Napa, Calif.; Staten Island, N.Y.; Atlanta and Las Vegas.

“Sharing the story of MDA’s efforts to help people with devastating muscle-wasting diseases is one of the richest aspects of my life,” Gilman said. “It’s critically important that people my age understand that a million others have invested their hopes in MDA’s service and research programs. We have to support those programs however we can.”

Gilman has been a commanding presence on the recording scene since he gained instant national prominence as a young teen in 2000. His CDs and albums have earned him four Billboard Music Video Awards. In 2001 he received the American Music Award for Favorite New Country Artist.

Expanding MDA’s presence on Capitol Hill

Annie Kennedy
Annie Kennedy

MDA has created a new position, vice president of advocacy, to augment its presence in the nation’s capital.

Annie Kennedy, a nine-year MDA veteran, has assumed the new role in Washington, D.C. Kennedy joined the Association as a case aide, then worked as a health care services coordinator in Virginia, before being named director of MDA’s ALS Division at MDA headquarters in 2006.

MDA President and CEO Gerald Weinberg said Kennedy’s presence in Washington “will give MDA a stronger and more immediate voice in behalf of families we serve.”

Huge gift funds FSH research center

The University of Rochester Medical Center, at which MDA maintains a clinic, has received a $7.1 million gift for neurological research from New York developer and philanthropist Richard T. Fields.

The gift will be used to create a research and clinical center of excellence for facioscapulohumeral dystrophy (FSHD), to be named the Fields Center for FSHD and Neuromuscular Research.

FSHD causes progressive weakness of muscles in the face, shoulder blades and upper arms. About one-third of people with FSHD require wheelchairs. The disease is understood to have genetic origins, but the actual mechanism by which it operates is unknown.

Fields Center programs will be an international collaboration between URMC’s Neurology Department and Leiden University Medical Center in the Netherlands. Scientists at Leiden were the first to map the genetic mutation for FSHD, in 1990.

Luke takes on another ambassadorial role

Luke Christie

For two years, 14-year-old Luke Christie of Due West, S.C., has done an outstanding job as MDA’s National Goodwill ambassador. (See the article about the incoming ambassador Abbey Umali.) In 2008, Luke will continue his MDA diplomacy duties in a slightly different direction, as the MDA Harley-Davidson Motor Company Goodwill Ambassador. Harley-Davidson is one of MDA’s largest national sponsors, and Luke will be a part of its 105th anniversary events.

New California law will help Fill-the-Boot

MDA staff in California recently facilitated passage of state legislation dealing with public fundraising activities by nonprofit organizations. The new law should have positive repercussions for Fill-the-Boot campaigns, a favorite fundraising approach of MDA’s largest national sponsor, the International Association of Fire Fighters (IAFF).

California state laws were ambiguous about the circumstances under which Fill-the-Boot drives legally could be conducted. As a result, some municipalities used the vague statutes to restrict fire fighters’ efforts to collect donations (in their boots) in public areas, such as on medians in city streets.

In the last five years, Fill-the-Boot drives in California have collected more than $5 million for MDA, so the IAFF and the Association felt it was imperative to keep the program alive and operating as efficiently as possible.

Now, with the passage of California State Bill 582, legal language has been crafted that spells out specifically how Fill-the-Boot drives can be conducted.

MDA hopes that the California law will serve as a model for other states.

Shamrocks, the luck o’ the Irish and green

MDA’s Shamrocks Against Dystrophy program gets under way in February for the 25th year, bringing the “luck of the Irish” to a location near you.

MDA Shamrocks, posters, banners and table tents will promote the program at thousands of participating grocery stores, restaurants and other businesses across the country through March 17. Customers at participating retailers are urged to buy and sign Shamrock mobiles, which will be displayed on store walls, ceilings and windows.

In 2007, the campaign — chaired by the talented singer/actress Maureen McGovern — brought in more than $13 million for MDA’s programs. (To see some creative Shamrocks displays done by employees at Lowe’s home improvement stores, see "Lowe’s and MDA: Building Something Together.")

MDA writers earn national recognition

Several writers for MDA’s Quest magazine and MDA/ALS Newsmagazine were recognized for writing excellence in 2006 by the National Health Information Awards.

Now in its 14th year, the awards program is organized by the Health Information Resource Center to recognize the best consumer health programs and materials from organizations throughout the country.

Two favorite Telethon performers earn big-time kudos

Bradley Walker
Calvin Johnson
Bradley Walker backstage at the IBMA Awards. Calvin Ray Johnson performing on the 2007 MDA Jerry Lewis Telethon.

Two highly talented entertainers who each happen to have a neuromuscular disease received prestigious national honors from their peers and the music industry.

Bluegrass singer Bradley Walker, 29, was named Male Vocalist of the Year in October by the International Bluegrass Music Association. Walker, of Athens, Ala., has been singing on stage since he was 4, and wowed Telethon audiences five times with his marvelously resonant baritone. Walker has nemaline myopathy, which impairs muscle tone and contraction, causing generalized weakness.

Calvin Ray Johnson, 27, is a four-time Telethon veteran. A native of Washington, Ky., this renowned country singer has Duchenne muscular dystrophy. In 2007, he earned fan and peer recognition on three fronts. His “Take that Chance” CD debuted; his first single, “Should Have Been Singing Rock of Ages,” was number one on the charts in Europe; and he received a Lifetime Achievement Award from the Epiphone Guitar Co. (a division of Gibson Musical Instruments) for his accomplishments in the world of music, as well as his humanitarian service to MDA.

No votes yet
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy