MDA Matters Spring 2009

by Quest Staff on April 1, 2009 - 4:02pm

QUEST Vol. 16, No. 2

Featured in this article: Billy Gilman and Abbey Umali perform ** Special sunglasses for Augie's Quest ** ADA Act amended ** Abbey Umali serves second term as NGA ** Bill Gilman named MDA Celebrity Ambassador ** Luke Christie, former NGA, keeps busy ** MDA Art Collection exhibit ** Major League Baseball & 4♦ALS Awareness team ** Ace Young back on Idol TV.

Billy and Abbey perform at MDA Clinic Directors' Meeting

Billy Gilman & Abbey Umali

During the MDA Clinic Directors' Meeting in January, the crowd was treated to performances by 2009 National Goodwill Ambassador Abbey Umali and MDA Celebrity Ambassador Billy Gilman.

Billy sang "Hey Little Suzie" (one of Abbey's favorites) and a new song he wrote, "I Know," after which the pair reprised the duet they performed on the 2008 Telethon, "What a Wonderful World."

Oakley special-edition sunglasses support MDA's Augie's Quest

U.S. optics manufacturer Oakley has teamed with MDA’s Augie’s Quest to raise funds for ALS research.

Oakley is producing two special versions (polarized and unpolarized) of its HIJINX sunglasses, each emblazoned with an Augie’s Quest logo. For every sale of a pair, Oakley will contribute $20 to MDA ALS research.

Augie’s Quest, a fast-track research effort aimed at finding treatments or a cure for amyotrophic lateral sclerosis (Lou Gehrig’s disease), was started by Augie Nieto, 51, through MDA after he learned he had the disease in 2005.

Nieto, of Corona del Mar, Calif., is a fitness industry pioneer who co-founded Life Fitness, the world leader in commercial and home fitness equipment. He and his wife, Lynne, serve as co-chairs of MDA’s ALS Division.

The special edition Oakley sunglasses are available at select Oakley stores nationwide.

Amended ADA Act promises positive changes

On Jan. 1, new amendments to the Americans with Disabilities Act (ADA) went into effect that clarify and refine the protections offered to people with disabilities. MDA’s Advocacy program numbered among the many disability advocates who supported passage of the 2008 ADA Amendment Act.

Among the biggest changes in the new ADA amendments: Charges of employment discrimination will no longer hinge on whether or not the complainant has a “qualifying” disability. Instead, the focus will be on whether discrimination has occurred.

The precise impact of the ADA Amendments Act of 2008 is unknown because regulations for implementing its provisions have not yet been formulated. Stay tuned for more details as they become available.

Bundle of charm, energy' returns as MDA Goodwill Ambassador

MDA is delighted to have 10-year-old Abbey Umali return for a second term as the Association’s National Goodwill Ambassador this year.

During her first term in 2008, the outgoing youngster traveled the country with her parents, speaking about MDA’s programs of research and services. The Umalis will continue making appearances at MDA fundraisers and special events this year.

Abbey has a form of Charcot-Marie-Tooth (CMT) disease and walks with the help of leg braces.

The Umalis (Abbey’s mother Wendi is a physical therapist; her dad Joel is a dentist), from Redlands, Calif., have made live appearances for the past three years on the Jerry Lewis MDA Labor Day Telethon. Just this year, Abbey and family attended the MDA Clinic Directors’ Conference in Las Vegas and the ERA International Business Conference in San Antonio.

Upon first meeting Abbey, Lewis described her as “a bundle of energy and charm.”

Billy Gilman joins cadre of MDA Celebrity Ambassadors

Award-winning country music artist Billy Gilman is busy with his new spokesman position for MDA.

Gilman, 21, moves into the role of MDA Celebrity Ambassador, joining a corps of actors, musicians and artists who help spread the word about MDA’s lifesaving mission. Gilman will perform and speak at MDA events and fundraisers, give news media interviews and address meetings of MDA national sponsors. Just this spring he has made appearances at the MDA Clinic Directors’ meeting in Las Vegas and the Heartsongs Gala in Washington.

Gilman has been a dynamic presence on the recording scene since he gained instant national prominence as a 12-year old in 2000. He has earned four Billboard Music Video Awards and, in 2001, received the American Music Award for Favorite New Country Artist.

Where's Luke?

Luke Christie, 15, a youthful dynamo from Due West, S.C., is keeping very busy this spring fulfilling his new role as MDA National Youth Chairman.

Luke Christie

Christie’s duties include speaking to teens, young adults and MDA sponsors, including youth sponsors such as DECA (an association of marketing students) and Kappa Alpha Order. He also is continuing to work with Harley-Davidson, one of MDA’s largest sponsors.

Christie was in Washington in January to participate in the Harley-Davidson Winter Dealer Meeting. In February, he and his father traveled to Spartanburg, S.C., to welcome Denny’s to the MDA family and help kick off the restaurant chain’s 2009 Shamrocks fundraising campaign.

Also this spring, Christie visited the Black & Blue Ball in Charlotte, N.C.; the 26th Annual SuperDance in Staten Island, N.Y.; and the Promise of Hope Gala in South Carolina.

Christie served as MDA’s National Goodwill Ambassador for two years (preceding Abbey Umali), then last year shifted his considerable communications talent to serve as the Harley-Davidson MDA Goodwill Ambassador. This year, he added the role of MDA National Youth Chairman, replacing Billy Gilman.

Christie has spinal muscular atrophy and uses a power wheelchair. A high school honor student, artist and starranked Boy Scout, he’s also an active member of Future Business Leaders of America.

MDA Art Collection on exhibit

From coast to coast, the MDA Art Collection continues to educate and demonstrate that disability is no barrier to creativity.

On December 31, Sunquest Information Systems Inc., a company specializing in clinical data management for hospitals and commercial laboratories in the U.S. and abroad, completed a 13-month exhibit of 28 pieces from the MDA Collection, at its headquarters in Tucson. The exhibit time was extended due to popular demand.

An exhibit featuring 51 works from the Collection opened Feb. 2 at the Nevada State Library in Carson City, Nev. The works will be on display through June 30. This will be the Collection’s third exhibit in Nevada; the first was 10 years ago in Las Vegas, and the second eight years ago in Reno. The Carson City exhibit was arranged with help from Michael Rabe, a Reno-based artist who has three works in the Collection,

The Collection already is booking exhibits for 2010 and will start the new year with 15 works on display at the Colorado Springs Airport. Works from the Collection have been exhibited in Denver in 2002 and 2003.

As always, MDA appreciates hearing about any museum, gallery or corporate entity that may be interested in hosting an exhibit of selected works from the Collection. These exhibits usually are underwritten by the participating facility or corporate/individual sponsors.

Major League Baseball forms 4♦ALS Awareness team

MDA is partnering with Major League Baseball (MLB) to raise awareness of the fight against ALS with a new campaign, 4♦ALS Awareness.

Lou Gehrig, in his prime

Four national ALS organizations, including MDA’s Augie’s Quest, are part of the new campaign, which will culminate on July 4 — the 70th anniversary of Lou Gehrig’s famous farewell speech at Yankee Stadium, in which he called himself “the luckiest man on the face of the earth.”

Gehrig died of ALS in 1941, and the obscure disorder became widely known as Lou Gehrig’s disease. His widow, Eleanor Gehrig, joined forces with MDA in the early 1950s.

On July 4, during the pregame ceremonies in baseball stadiums around the country, each home team will host an onfield reading of Gehrig’s farewell speech. All players will wear a “4♦ALS” patch on their chests and MLB will promote the effort in a variety of ways, including in-stadium promotions.

Some inspiration for the event came from a single individual, Michael Goldsmith, 58, of Heber City, Utah, who received an ALS diagnosis in 2006. Goldsmith is a member of MDA’s Salt Lake City Muscle Team committee and active in other local MDA programs.

A baseball fan, Goldsmith wrote an opinion column for Newsweek magazine in November 2008, urging baseball to do more to combat the disease that felled one of its all-time greats. With leadership from Baseball Commissioner Bud Selig, the idea took off.

In conjunction with the July 4 event, MLB will host an online auction to raise funds for ALS research, and will continue to work with 4♦ALS to identify additional opportunities to raise funds and awareness.

In addition to MDA’s Augie’s Quest research initiative, the other ALS organizations are Project A.L.S. The ALS Therapy Development Institute and the ALS Association. More information about events around the country will be available closer to July 4.

Besides the ALS Awareness campaign, MDA continues to expand its relationship with MLB teams with ALS awareness events across the country. For example, the Atlanta Braves will host an ALS Awareness celebration in May for MDA families affected by ALS, MDA sponsors and others.

Ace is back on Idol TV

MDA Celebrity Ambassador and Season 5 “American Idol” contestant Ace Young will be returning to TV this season on the Fox Reality Channel. He’ll be serving as co-host of “American Idol Extra” and will join Jillian Reynolds, who has appeared on “Fox NFL Sunday” and “Good Day LA.” The show will feature exclusive interviews with the Top 12 “American Idol” finalists mere moments after they are eliminated from competition.

This year, “American Idol Extra” will be shot on the Idol stage and will go backstage to show viewers all the excitement and tension of the show. Judges, producers, vocal coaches and stylists will give firsthand accounts of what it takes to get the popular TV show on the air each week. Ace Young provides a fresh new perspective by using his expertise and empathy to get the inside scoop.

The fourth season of “American Idol Extra” began March 26, and airs on Thursdays at 7 p.m. and 10 p.m. EST on the Fox Reality Channel.

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