MDA / Quest Vol 13 No 3 / MDA Matters

May Is ALS Awareness Month

As part of nationwide ALS Awareness Month, MDA offices across the country are holding special events in May to raise public awareness of the Augie Nieto PSA disease and of MDA’s worldwide leadership in the search for a cure.

MDA is also distributing ALS informational materials to national and local news media during May, including print and video public service announcements featuring Augie and Lynne Nieto of Corona del Mar, Calif., co-chairpersons of MDA’s ALS Division. Other PSAs feature Lou Gehrig, whose experience gave ALS its popular name.

Augie Nieto, Lance Armstrong and Bob Saget

The Bash for Augie's Quest, held in March in Las Vegas, brought in $2.8 million for MDA's fight against ALS. Champion bicyclist Lance Armstrong (above, left) spoke and donated a tour bike to be auctioned. The emcee (above, right) was actor-comedian Bob Saget.

Also to commemorate ALS Awareness Month,


Stuart Nichols

Stuart Nichols of Kingwood, Texas, who has ALS, is completing his goal of attending a baseball game in every major league ballpark in North America. On May 2, Nichols is scheduled to watch the Arizona Diamondbacks play at Chase Field in Phoenix — the 30th and last park on his list. Ironically, it was on May 2, 1939, that Gehrig took himself out of the New York Yankees lineup, ending his streak of 2,130 consecutive games played.

MDA has invested nearly $190 million in ALS research and services. For more about the ALS Division, go to http://www.als-mda.org/.


Nieto greets Alan Alderman and his daughter, Jessica, from Salt Lake City. Alderman, like Nieto, has ALS.

Lewis Honored by French

Jerry Lewis On March 16, MDA National Chairman JerryLewis received the honorary title of Legion Commander upon hisinduction into France’s Legion of Honor –– a fitting gift for his 80th birthday.

France’s Culture Minister Renaud Donnedieu de Vabres presented the award to Lewis by decree of President Jacques Chirac. Legion membership, the highest accolade the French government can bestow, honors individuals for outstanding achievements.

In 1984, Lewis received the Legion of Honor medal for his extraordinary accomplishments in public service.

Viva Las Vegas!

The 2006 Jerry Lewis MDA Labor Day Telethon returns to Las Vegas Sept. 3-4 after a 12-year hiatus. It will be broadcast nationally from the South Coast Hotel & Casino. Jerry Lewis MDA Telethon

The hotel’s 22,000-square-foot ballroom will be home to the 21½-hour televised fund-raiser that reaches some 50 million viewers nationwide. MDA’s Labor Day Telethon first aired in 1966 from New York.

The Telethon was broadcast from Las Vegas for several years before moving to CBS’s Television City in Los Angeles in 1995. Last year’s Telethon originated at The Beverly Hilton in Beverly Hills, Calif.

Don Francisco Tapes New Material for MDA Hispanic Marketing

Mario Kreutzberger

MDA is preparing new Hispanic marketing campaign materials featuring Mario Kreutzberger, the legendary Don Francisco of Univision’s “Sabado Gigante.”

Kreutzberger, spokesman for MDA’s Hispanic outreach effort, Un Futuro Con Esperanza, will be featured in new videos, print PSAs and Telethon appeals geared toward the Spanish-speaking market.

Kreutzberger is an MDA national vice president.

Heartsongs Gala Earns Record $1.1 Million

Mattie Stepanek holding his Journey Through Heartsongs Book The fourth annual MDA Heartsongs Gala, named after the late MDA National Goodwill Ambassador Mattie J.T. Stepanek’s best-selling series of Heartsongs poetry books, was a record-setting event. The Feb. 25 Passport to a Cure inWashington raised $1.15 million for MDA research and services.

Hosted by Tony Perkins of ABC’s “Good Morning America,” the sold-out gala paid tribute to Mattie, who died in June 2004. Mattie’s mother, Jeni, an MDA national vice president, was a keynote speaker.

The black-tie event also honored Charles Steiner, businessman and philanthropist, as the 2006 Heartsongs Award winner for his long-standing support of MDA’s research efforts.

Ambassadors from Mexico, Guatemala, Chile, Argentina and Brazil attended the event. Comedian Paul Rodriguez, salsa band Orquesta La Romana, and singer and MDA National Youth Chairman Billy Gilman provided the entertainment for 730 guests.

MDA Revises Booklet for Parents

Learning to Live with Neuromuscular Disease - A Message For Parents MDA is issuing a revised version of its booklet for parents, “Learning to Live with Neuromuscular Disease.”

The new booklet retains the original text by psychologist Sylvia E. McGriff, which offers strategies, advice and encouragement to help families cope with the impact of their child’s neuromuscular disease on their lives. The new edition supplements the text with adapted versions of several Quest articles about parenting.

Photos of families served by MDA, quotes from families, and children’s artwork from the MDA Art Collection contribute to the new look of the booklet. Copies are available through your local MDA office.

Luke, Billy Tour to Thank MDA Sponsors


Billy Gilman and Luke Christie

MDA National Goodwill Ambassador Luke Christie and his family have met with several MDA national sponsors this year to thank them for their support of the Association.

In February, Luke, 12, and MDA National YouthChairman Billy Gilman wowed some 5,000 brokers at the ERA International Business Conference in San Francisco. Gilman appeared and performed at the ERA meeting for the third year.

The Christies also spoke at the National Child Care Association Annual Leadership Conference in Las Vegas in March. Gilman represented MDA at the DECA International Career Development Conference April 29-May 1 in Dallas.

Luke introduces himself to MDA sponsors with an 8-page booklet about him and his life with spinal muscular atrophy. He has several other engagements with sponsors scheduled this year.