MDA Matters November-December 2006

by Quest Staff on November 1, 2006 - 1:53pm

QUEST Vol. 13, No. 6

Featured in this article: Lewis nominated for medal ** Publications for Hispanics ** Wings Over Wall Street ** Ms. Wheelchair America ** Year-end donations ** Flu shots ** Personal Achievement Award nominations ** Grant enables Quest to expand

Lewis nominated for Congressional Gold Medal

Three U.S. senators have introduced a resolution to honor MDA National Chairman Jerry Lewis with the Congressional Gold Medal for his lifetime commitment to philanthropy and his contributions as an entertainer.

The medal is the country’s highest civilian honor. Recipients include Robert F. Kennedy, Winston Churchill, Mother Teresa, Rosa Parks, Pope John Paul II, Martin Luther King Jr. and Coretta Scott King.

Lewis, 80, has hosted the MDA Labor Day Telethon since 1966, and has been MDA’s most prominent volunteer leader for more than 50 years.

The resolution needs approval from two-thirds of both the House of Representatives and the Senate. If you’d like to urge congressional representatives to support the resolution, you can contact them via and

PSAs, publications reach out to Hispanics

This year, MDA produced a new public service announcement campaign in Spanish, featuring Mario Kreutzberger, the legendary Don Francisco of Univision’s “Sábado Gigante,” and CITGO-sponsored Rolex Series driver Milka Duno.

Kreutzberger, an MDA national vice president and spokesperson for MDA’s Hispanic outreach program, Un Futuro Con Esperanza, and Duno are featured in videos and print PSAs in English and Spanish. The ads, with the theme “MDA Is There — Creating a Future With Hope,” have been distributed across the country.

MDA also has updated four of its publications in Spanish this year: “Aprendiendo a Vivir con una Enfermedad Neuromuscular: Un Mensaje para los Padres” (Learning to Live with Neuromuscular Disease); “Desarrollos Recientes de Investigaciones” (Recent Research Developments); “Respire Mejor” (Breathe Easy); and “Una Guía para Maestros sobre las Enfermedades Neuromusculares” (A Teacher’s Guide).

These publications are available through local MDA offices and on the Spanish Web site, at

New Yorkers take wing for MDA ALS Division

Celebrities and New York financial leaders raised $1,010,213 at MDA’s sixth annual Wings Over Wall Street gala on Sept. 28. In its six years, the event has raised more than $6 million for MDA’s ALS research program.

CNBC anchor Liz Claman and MSNBC’s Rita Cosby hosted the evening’s VIP cocktail reception, auctions and car raffle, featuring a 2007 Mazda MX-5 Miata.

Lisa Marie Utasi, director and senior equity trader at ClearBridge Advisors, and Mary McDermott-Holland, senior vice president of Trading at Franklin Portfolio Associates, were the event co-chairs. Three awards were given for outstanding contributions to the fight against ALS.

Ms. Wheelchair America chooses Massachusetts ‘Woman of Strength’

Autumn Grant, Ms. Wheelchair 2007

Autumn Grant of Attleboro, Mass., was named Ms. Wheelchair America for 2007 at the national pageant in Little Rock, Ark., Aug. 5.

Grant, 32, who has limb-girdle muscular dystrophy, competed against 26 other finalists for the national title. With its theme Women of Strength, the competition featured “amazing women who use wheelchairs and are successful in so many different aspects of their lives,” Grant said.

In her new role, Grant will travel the country as an advocate for people with disabilities and educate the public about disability-related issues. She’ll visit advocacy groups, meet with state and local government officials, make public appearances and give media interviews.

“It’s a great opportunity to get my message out there and reach more people,” she said.

Grant also will promote her “Independence Through Education” platform, which aims to break down barriers and challenges that people with disabilities encounter in higher education. She was moved to adopt this platform because of some startling statistics regarding women with disabilities and education.

“My education is how I’ve obtained my own independence,” she said. “I’m in a position where I make enough money, and I don’t have to depend on the state or Social Security. I wouldn’t be able to do that without my education. Independence through education is possible.”

Less than 10 percent of women with disabilities have a bachelor’s degree, and only 30 percent are employed full-time. About 25 percent of women with disabilities live below the poverty line. (Statistics provided by the Baylor College of Medicine’s Center for Research on Women with Disabilities.)

Grant is director of the Center for Academic Achievement at Stonehill College in Easton, Mass. Her duties include: coordinating a campuswide tutoring program, running a pre-fall program for incoming freshmen who need extra help; advising undecided students; teaching two classes; and coordinating disability support services.

“I love it, and I experience a lot of joy just from helping [the students],” she explained. “I love the fact that I work someplace that’s changing people’s lives in terms of educating the whole person.”

Grant has a bachelor’s degree in humanities from Providence College and a master’s from Boston College in higher education administration. She plans to begin doctoral studies in education next fall.

She also volunteers as a tutor at a literacy center and reads to kindergarten classes. Grant, who uses a power wheelchair for mobility, received MDA’s Personal Achievement Award for Rhode Island in 2002.

It’s the second consecutive year that the Ms. Wheelchair America is a woman affected by a neuromuscular disease. The previous winner, Kristen Connors of Cranston, R.I., and her sister Kelly Buonaccorsi were the recipients of MDA’s National Personal Achievement Award for 2006.

‘Tis the season for giving'

This holiday season, please remember to put MDA on your gift list.

Your holiday gift before the end of 2006 will help make dreams come true for tens of thousands of people with neuromuscular diseases. It’s also tax deductible.

Just visit the donation page on MDA's Web site or call (888) HELP MDA.

And the award goes to…

You can nominate someone for an MDA Personal Achievement Award. The deadline is in late January.

The awards — presented at local, state and national levels — recognize contributions made by people with neuromuscular diseases. You can pick up nomination forms and guidelines at your local MDA office.

Read a profile of Matthew ‘Mo’ Gerhardt of East Lansing, Mich., the 2007 national award recipient, in this issue.

Roll up your sleeve —it’s flu shot time

Influenza can be dangerous for people with neuromuscular diseases. That’s why MDA offers flu shots each fall to those it serves.

For information, call your local MDA office. If you have an autoimmune disease or are taking immunosuppressant drugs, including prednisone, check with your doctor before getting a flu shot.

It takes about two weeks for protection to develop after the vaccination, and protection can last up to a year, according to the Centers for Disease Control.

Editor's Note — Thanks, Wyeth

You may notice that this issue of Quest — the last of 2006 — is thicker than usual. In fact it’s the largest issue we’ve ever published — 88 pages.

This expansion was made possible by a generous grant from Wyeth Pharmaceuticals, for which we’re very grateful. While meeting with MDA research staff to discuss a mutual project, Wyeth representatives invited the Association to apply for assistance with any of its programs. The result was two grants — one to benefit MDA summer camps, and one for Quest.

With worldwide headquarters in Collegeville, Pa., Wyeth Pharmaceuticals is one of the world’s largest developers and manufacturers of pharmaceuticals and health care products.

Wyeth’s gift to MDA is part of its extensive grants and donations program.

In collaboration with MDA, Wyeth is conducting an eight-state clinical trial of MYO-029 in adults with several muscular dystrophies.

We’re deeply indebted to Wyeth for assisting programs in MDA’s three primary mission areas: research, services and information.

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