MDA Matters May-June 2005

by Quest Staff on May 1, 2005 - 9:57am

MDA Issues New Book for ALS Awareness Month

For 14 years, the nation has observed May as ALS Awareness Month. One way MDA will mark the occasion this year is by releasing a new book called Everyday Life With ALS: A Practical Guide.

The guide is a revision and expansion of ALS: Maintaining Mobility, which was published some 25 years ago by the MDA/ALS Center at Baylor College of Medicine in Houston. Copies of the book and accompanying CD will be provided to people with ALS who are registered with MDA and to MDA clinics and offices. Copies also will be available for sale.

Everyday Life With ALS: A Practical Guide

The updated guide is designed to help readers manage their daily experiences with ALS. Chapters address the needs faced by those with ALS and their caregivers in the areas of daily living, mobility, respiratory care, communication, home modification, exercise and more.

Also during May, MDA will distribute ALS information to the media, and MDA districts will hold local events to raise public awareness about ALS and MDA’s search for a cure. Public service announcements featuring Chris and Reda Rice of Houston, co-chairpersons of MDA’s ALS Division, and Lou Gehrig are set to run in print and on television.

Morgan goes on tour

MDA National Goodwill Ambassador Morgan Fritz and her family began a tour in March, meeting with several MDA national sponsors. Morgan, 6, of St. Peters, Mo., is visiting sponsors’ national headquarters and distributing a new booklet called “Meet Morgan Fritz.”

Morgan Fritz with her mother Sue Fritz and MDA's Scarlett Marchman
MDA's Scarlett Marchman (left), Morgan Fritz and Sue Fritz at the National Child Care Association convention in Orlando, Fla., in March

The 8-page booklet includes a letter from Morgan and her parents, Ron and Sue, thanking MDA and its sponsors for their support. Along with pictures of Morgan, her parents and siblings, the booklet features facts about Morgan, information about spinal muscular atrophy, and a page about her duties as MDA’s National Goodwill Ambassador.

Morgan’s tour is expected to continue through the summer.

Jerry Lewis receives onors for film career

MDA National Chairman Jerry Lewis received the International Press Academy’s TESLA Award in recognition of visionary achievements as an innovator in the field of visual technology for the cinema arts. Presented on Jan. 23 in Beverly Hills, Calif., the award puts Lewis in the ranks of past recipients George Lucas and James Cameron.

Lewis is credited with creating the video assist, which employs a secondary videotape camera keyed on the same image as the main film-loaded camera. It allows the director to watch a scene on a video monitor while it’s being shot or to view an instant replay.

Jerry Lewis
Jerry Lewis

On Feb. 13, Lewis received a Golden Camera Lifetime Achievement Award in Berlin. The international film award, given by the Axel Springer publishing company, also was presented to Goldie Hawn, Dustin Hoffman, Tina Turner and Bruce Willis.

Gilman hosts fund-raiser, releases new CD

National MDA Youth Chairman Billy Gilman hosted a Musical Night of Songs on March 6 to benefit MDA. Some 350 guests attended the event in Westerly, R.I., which raised $11,500 for MDA’s research and services.

Billy Gilman
Billy Gilman

The teen singer’s fifth album “Everything and More” is set to hit stores nationwide on May 3. In 2003, Gilman, who turns 17 on May 24, released “Music Through Heartsongs,” inspired by the poetry of his friend, the late MDA National Goodwill Ambassador Mattie J.T. Stepanek.

Heartsongs Gala pays tribute to Mattie Stepanek

The third annual Heartsongs Gala — the first held since the death of MDA National Goodwill Ambassador Mattie J.T. Stepanek for whose best-selling Heartsongs poetry series it was named — was a huge success.

Hosted by Silver Diner CEO and event chairman Bob Giaimo, the Feb. 26 bash raised nearly $837,000 for MDA research and services. The Washington event was a tribute to Stepanek, 13-year-old poet and peacemaker who died in June from a rare disease related to muscular dystrophy. Mattie’s mother, Jeni, was a keynote speaker and award presenter.

David Reznick, chairman of the Reznick Group, received the 2005 Heartsongs Award for his long-standing support of MDA’s research efforts.

Mattie Stepanek
Mattie Stepanek

Among the 700 guests were a number of foreign diplomats and other Washington dignitaries, including former congressman and 1996 vice presidential candidate Jack Kemp.

World-renowned swing band Big Bad Voodoo Daddy, Grammy- and Oscar-winning recording artist Christopher Cross and MDA National Youth Chairman Billy Gilman provided entertainment.

Humanitarian Award presented to Jeni Stepanek

Jeni Stepanek
Jeni Stepanek

The Child Welfare League of America (CWLA) presented the Natalie Heineman Award to MDA National Vice President Jeni Stepanek at its national conference on March 11 in Washington. The award, which honors outstanding humanitarians and service to children, was presented to Stepanek in recognition of her son Mattie’s work as a poet and peace advocate.

The CWLA is a national association of public and private nonprofit agencies that assist more than 3.5 million abused and neglected children and their families each year with a wide range of services.

Tucson attorney is newest MDA VP

Attorney Benjamin Bauer of Tucson, Ariz., was named to a one-year term as a national vice president during MDA’s recent Board of Directors’ meeting in Phoenix. MDA vice presidents assist the Association through advocacy and support of its activities.

A director of the Fennemore Craig law firm, Bauer practices in the areas of commercial transactions, real estate and finance. His firm has three offices in Arizona and one in Lincoln, Neb.

MDA art on the move

“Transcending Barriers: Selections from the MDA Art Collection” will be on display at the Western National Parks Association headquarters in Tucson, Ariz., for the month of July. The traveling exhibit includes 10 to 20 pieces from MDA’s permanent collection.

MDA Art piece

Western National Parks Association operates bookstores in 63 national parks in 11 Western states.

Now in its 13th year, the Collection features more than 300 artworks by people from across the country with neuromuscular diseases. The works are on display at MDA national headquarters in Tucson, and can be viewed at

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