MDA Matters September-October 2008

by Quest Staff on September 1, 2008 - 12:24pm

QUEST Vol. 15, No. 5

Featured in this article: Mattie's park ** Jeni Stepanek earns doctorate ** MDA Advocacy team on web ** Fitness clubs in ALS fight ** Ace Young's new CD ** Chats, equipment loan closet, and MDA's Art Collection in demand.

Moving ahead with Mattie’s park

 Artist’s rendering of the Peace Garden in the future Mattie Stepanek Park

Fundraising and planning continue for the 28-acre park in Rockville, Md., dedicated to former MDA National Goodwill Ambassador Mattie Stepanek, who died in 2004 just shy of his 14th birthday. Mattie’s friends and Rockville residents undertook the project to spread the messages of hope and peace Mattie conveyed in his books and Heartsongs poetry.

The Peace Garden portion of the park will feature a life-size bronze statue of Mattie in his wheelchair, with his service dog Micah nearby. They will be surrounded by three concrete chess tables to invite and remind visitors of one of Mattie’s favorite sayings — “Peace could begin over a cup of tea and a game of chess.”

A special fund was established in Mattie’s name to spur research into mitochondrial myopathy. To learn more about the Mattie Fund or to donate, go to

Mattie’s mom tops in her class

Dr. Jennifer Stepanek

Jeni Stepanek, mother of late National Goodwill Ambassador Mattie Stepanek, was awarded her doctoral degree in Early Childhood Special Education from the University of Maryland this May, serving as the commencement speaker for the College of Education and being named Outstanding Doctoral Student.

Stepanek, an MDA national vice president, has the adult form of dysautonomic mitochondrial myopathy, the same disease that took the lives of Mattie and his three older siblings. “We should always strive to make a difference in life as we touch the world with our knowledge based on academic training, and also with our wisdom and our understanding based on personal experience,” she told an interviewer after graduation. “Mattie taught me that in each moment of life we have the gift of choice, and therefore hope.”

MDA Advocacy team on the Web

MDA’s new Advocacy Department now has a home on the Association’s Web site at

The Advocacy Department was initiated last year to be an effective voice on Capitol Hill for the thousands of families served by MDA, and to encourage people to “Take 5” and actively participate in the public policy process.

The Advocacy “Take 5” Web pages include descriptions of current legislation on which MDA has taken a position and tools for use in contacting legislators. (See "Meet GINA" for more information about the recently passed Genetic Information Nondiscrimination Act, and what it means for families served by MDA.)

Fitness clubs prominent in MDA’s ALS battle

Augie and Lynne Nieto

An especially fitting tribute to MDA’s ALS Division co-chairperson Augie Nieto is taking place at fitness clubs across the country.

As a young man, Nieto worked up from humble beginnings as a fitness equipment salesman to become a leader and innovator in the industry. He was co-founder and former president of Life Fitness, and is now chairman of Octane Fitness. In 2005, he received the fitness industry’s top honor, the Lifetime Achievement Award. Now 50, he received a diagnosis of ALS in March 2005.

To recognize Nieto’s contributions to the industry, scores of health clubs, including large chains like Life Time Fitness and the Atlantic Club, have joined to create Clubs for the Cure, which supports Augie’s Quest, MDA’s ALS research initiative. The goal of Augie’s Quest is to raise $18 million for ALS research in a three-year period.

To support that goal, clubs are organizing athletic events in which club members solicit monetary pledges for each hour they participate. Does your health club belong to Clubs for a Cure? If not, give them MDA’s number (800-572-1717) and suggest they sign on!

Ace’s new CD hits the streets


Ace Young — “American Idol” finalist, actor, Grammy-nominated singer and songwriter and MDA Celebrity Ambassador — has just released his first self-titled CD.

Billboard Magazine gave a very positive review to “Addicted,” the first single on the new CD, and Young was featured in an article in the national newspaper USA Today.

In addition to raising public awareness of MDA programs in appearances around the country, Young will be among the top entertainers performing on the 43rd Jerry Lewis MDA Labor Day Telethon. In an interview with the New York Post, he said serving as an MDA ambassador has been one of his proudest accomplishments.

Keep chatting!

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

Help us help others

If you have any medical equipment you’re not using, consider making a tax-deductible donation to the MDA Loan Closet. There’s strong demand for items such as manual and power wheelchairs, ramps and van lifts, communication devices, shower chairs and walkers.

Your donation can make a real difference to someone who needs an assistive device for daily living. To learn more, call your local MDA office at (800) 572-1717.

Aquarius: watercolor collage by Melody Cleary, Beaverton, Ore.

Art Collection remains in demand

Thirty-five selections from the MDA Art Collection just completed a three-month exhibit at the Forbes Galleries in New York City’s Forbes Building (headquarters of Forbes Magazine).

Located in Greenwich Village, the Galleries are billed as “a unique treasure trove of collectibles.” The Galleries first began hosting MDA Art Collection exhibits in 1995.

Woods: digital media by James D'Avanzo, Fairfield, Conn.
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