MDA Matters January-February 2005

In this issue, the latest news about MDA: Shamrocks appear in February ** Special Florida Telethon ** Lewis receives career award ** Rices chair ALS Division again ** Gilman leads youth ** Don Francisco honored ** Publications issues new disease booklet ** Mattie's Fund grows ** Wings Over Wall Street ** Myotonic MD conference ** MDA Art Exhibit ** Web site improvements ** MDA chats scheduled

by Quest Staff on January 1, 2005 - 4:42pm

Shamrocks Appear in February & March

MDA’s Shamrocks Against Dystrophy program, the nation’s largest St. Patrick’s Day charity-related fund-raiser, gets under way in February. Thousands of participating grocery stores, convenience stores, restaurants and other businesses across the country will sell $1 green and $5 gold shamrocks through March 17 and display them to benefit MDA.

Singer Maureen McGovern, an MDA Board member who also serves as chairperson of Shamrocks Against Dystrophy, has issued a call to businesses and customers to participate in the program to help MDA find treatments and cures for neuromuscular diseases.

For more information on getting your business involved in Shamrocks Against Dystrophy, call your local MDA office, or e-mail MDA Director of Program Development Brian Hunter at

Special Florida Editions of 2004 Telethon Aired

Although Hurricane Frances disrupted the 2004 MDA Telethon broadcast on Florida stations, MDA found a way to give the state’s residents a chance to experience some of the show’s memorable moments.

MDA created a special Florida edition of the Telethon, consisting of highlights from the 21½-hour live broadcast that the rest of the nation watched on Labor Day weekend. MDA’s nine “Love Network” stations in Florida aired parts of the broadcast during December.


Jerry Lewis
Jerry Lewis

Lewis to Receive Prestigious Film Honor

The Los Angeles Film Critics Association will present MDA National Chairman Jerry Lewis with its Career Achievement Award for 2004 on Jan. 13 in Los Angeles. Lewis, 78, joins the ranks of film legends Orson Welles, Billy Wilder, King Vidor, Robert Mitchum, Vincent Price, John Huston, Barbara Stanwyck and Robert Altman.

Lewis, who has served as MDA’s national chairman for more than five decades, has starred in, directed, written, co-authored, produced and made cameos in 66 motion picture, television and stage productions dating back to 1949.

 Houston Couple Returns to Co-chair ALS Division

Reda & Chris Rice

Reda and Chris Rice

Billy Gilman

Billy Gilman

Christopher and Reda Rice of Houston will serve a second year as co-chairpersons of MDA’s ALS Division. They’ll continue to help promote awareness of MDA’s leading efforts in the fight against ALS, or Lou Gehrig’s disease, through public appearances, media interviews and speaking engagements. They also appear in MDA videotaped public service announcements that have been broadcast nationwide.

Christopher Rice, 39, received a diagnosis of ALS in 2001. The neuromuscular disease has slurred his speech, and affected his strength and mobility. For more information, see MDA’s ALS Web site at

Gilman Again Leads MDA Youth Programs

National MDA Youth Chairman Billy Gilman has accepted MDA’s offer to continue as its youth chairman.

Gilman, who first accepted the voluntary position in 2003, spearheads the efforts of thousands of teenagers and young adults who help advance the Association’s lifesaving mission. He supports MDA through appearances at sponsor and volunteer events and through media interviews. Gilman also performs and hosts youth segments on the Jerry Lewis MDA Telethon.

Gilman’s original invitation to serve as the national youth chairman came at the recommendation of the late Mattie Stepanek, best-selling poet and MDA National Goodwill Ambassador.

Don Francisco enters Broadcast Hall of Fame

Mario Kreutzberger, the legendary “Don Francisco” of Univision’s variety show “Sabado Gigante,” was inducted into the Broadcasting and Cable Hall of Fame in November.

Kreutzberger, an MDA national vice president who serves as spokesman for MDA’s Hispanic Outreach Effort, is part of a prestigious group of inductees for 2004, including the chairmen or presidents of CBS Television, Warner Bros., ESPN, ABC Sports, Comcast Communications and other leading media outlets.

MDA Issues New Booklet on Myositis Diseases

Mytosis Disease Booklet

“Facts About Inflammatory Myopathies: Dermatomyositis, Polymyositis and Inclusion-Body Myositis” is a revised edition of MDA’s booklet on inflammatory muscle diseases. Geared toward people who’ve recently received a diagnosis, it updates the previous booklet with the addition of inclusion-body myositis, and new information on each disease.

A Spanish version of the 24-page pamphlet will be available soon.

“Facts About” publications about every disease in MDA’s program can be found at any MDA office or clinic. You also can call the Publications Department at (520) 529-2000, or visit

MDA’s Mattie Fund Grows

The MDA Mattie Fund to promote research on childhood neuromuscular diseases has reached nearly $1 million. As of early December, donations totaled more than $964,000.

The fund was created in response to the outpouring of public grief and support following the death of Mattie Stepanek on June 22. Stepanek had served as MDA’s National Goodwill Ambassador since 2002.

Donations to the fund can be made via telephone (888-HelpMDA), by mail (MDA Mattie Fund, P.O. Box 66002, Tucson, AZ 85728) or online at

Wings Over Wall Street Flies High

Celebrities and New York financial leaders joined together to raise $850,000 for MDA’s ALS research program at the fourth annual Wings Over Wall Street gala on Sept. 29. Actor William Baldwin and “Entertainment Tonight” anchor and MDA Board member Jann Carl co-hosted the event. MDA National Vice President Tony Orlando was a speaker. Neurologist Stanley H. Appel of Houston, Andrew T. Knipe of Oceanside, N.Y., and David Memmott of Rumson, N.J., received special awards for their efforts to fight ALS.

Myotonic MD Conference Successful for 4th Year

Tetsuo Ashizawa
Tetsuo Ashizawa

Nearly 100 people attended the fourth annual Myotonic Muscular Dystrophy Conference, presented by MDA’s Los Angeles Myotonic Dystrophy Assistance and Awareness Support Group (MDAASG) in September in Manhattan Beach, Calif. The gathering educated families and health care professionals from several states about myotonic muscular dystrophy (MMD).

Neurologist Tetsuo Ashizawa of the University of Texas Medical Branch in Galveston, an MDA research grantee, led medical presentations. Ashizawa gave an overview of the disease, and MDA Director of Research Development Sharon Hesterlee updated the participants on the latest MMD research. The conference also featured a panel discussion by family members of personal experiences with MMD.

MDA Art Exhibit Slated in Graham, Texas

“Transcending Barriers: Selections from the MDA Art Collection” will be on display at the Old Post Office and Art Center in Graham, Texas, from Jan. 8 through Feb. 5. The traveling exhibit includes 32 pieces from MDA’s permanent Collection.

A reception for the show will be held on Jan. 9, and the exhibit will be open to the public Wednesdays through Saturdays from 1 p.m. to 4 p.m.

MDA’s Collection is on display at the national headquarters in Tucson, Ariz., and it can be viewed at

MDA Website Offers Page on each Disease

MDA’s website helps users find all they need to know about any of the 40-plus diseases in MDA’s program. To find the “disease page” that interests you, go to and click on the disease name from the list.

Each disease page presents a quick definition of the disorder, and links users to the online MDA “Facts About” booklet covering that disorder. In addition, the page offers links to major Quest articles, “Research Updates” and news items about the disease; the current clinical trials listings; “Ask the Experts” questions and answers; stories about people who have the disease; and other relevant materials on the website.

The disease pages are kept up-to-date as new materials are posted online.

Keep Chatting!

Don’t forget to check the calendar at for the latest schedule of online chats about living with neuromuscular diseases.

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