MDA Matters May-June 2008

by Quest Staff on May 1, 2008 - 9:39am

QUEST Vol. 15, No. 3

MDA has an Ace in celebrity supporter

Singer, Grammy-nominated songwriter and actor Ace Young has a notable repertoire of philanthropy for his 27 years. Now he’s added MDA to the list of charitable endeavors he wants to help.

The charismatic young man from Denver (now living in Los Angeles) wows audiences of many ages with his performances in such genres as rhythm and blues, rock, pop and blue-eyed soul. His ability to empathize and communicate with many different types of American audiences made him a natural to serve as MDA’s Celebrity Ambassador.

Last year Young performed on the national broadcast of the Jerry Lewis MDA Labor Day Telethon, and in January he taped a series of TV public service announcements at MDA headquarters in Tucson.

Young has been singing since he was 9. Last year he was a finalist on the popular television talent show, “American Idol,” and in 2006 he was named one of People Magazine’s Hottest Bachelors. He has a new album coming out in June.

Honoring Duchenne research pioneers

More than 21 ago, MDA-funded researchers at Harvard University discovered the gene that, when flawed, causes Duchenne muscular dystrophy (DMD). On March 8 their milestone achievement was recognized at Children’s National Research Center in Washington, D.C.

In the spotlight and honored with individual awards were Louis Kunkel and his team of Eric Hoffman, Michel Koenig and Anthony Monaco. On hand to celebrate their accomplishment were other notable scientists in the DMD community, MDA families and other stakeholders in the battle against the devastating disease.

Keynote speaker Ben Cumbo (father of former MDA National Goodwill Ambassador Ben Cumbo Jr.) spoke passionately about how DMD research that evolved from the 1986 discovery changed the life of his son for the better. He spoke optimistically of recent MDA-supported research discoveries that draw ever closer to treatments and cures.

Commenting on the event later, MDA President & CEO Jerry Weinberg said the 1987 discovery always has been an important marker of success in the Association’s battle against neuromuscular diseases.

“In the not-too-distant future, Duchenne will fall to the dedication and perseverance of scientists like these,” he said. “MDA is proud to have facilitated their magnificent breakthrough for the benefit of all those we serve.”

Magazine salutes Texas lad/MDA ambassador

Sugar Land Magazine recently featured 10-year-old Jacob Richard, who has Duchenne muscular dystrophy, as one of seven Sugar Land, Texas, children “who are taking their talents to the next level.”

Jacob and his family were profiled on the 2007 Jerry Lewis MDA Labor Day Telethon. The young man is very active as the Houston-area MDA Goodwill Ambassador, and the Richards frequently are involved with the Association’s fundraising efforts.

Flight attendants gladly help out at Telethon

Some 30 years ago, United Airlines vice president (and MDA board member) Bob Sampson encouraged flight attendants to help out at the Jerry Lewis MDA Labor Day Telethon.

Joyce Spivey is the longest-serving member of that original group. She vividly recalls her first Telethon at the Sahara Hotel in Las Vegas in 1976. Every year since then, she has coordinated a team whose primary duties are making guests feel welcome and arranging seating for the 300-person audience, including the families of Telethon mainstays Jerry Lewis, Ed McMahon and Jann Carl.

“MDA staff are the nicest, most genuine people I’ve ever come across,” Spivey said, “I will do anything I can to help them. Every year when we get together again, it’s like a joyous family reunion.”

Today the group includes retirees, friends and acquaintances, although the core still is made up of flight attendants. MDA President & CEO Jerry Weinberg categorizes them as superstars.

“Three decades and counting … year after year these wonderful friends graciously volunteer their time for the full 21-plus hours of the Telethon. They’re invaluable members of the MDA family,” he said.

Walker croons for benevolent bikers

Bluegrass singing sensation Bradley Walker continues his good works in behalf of MDA.

Walker was the headline entertainer at a May 3 Harley-Davidson Eastern Dealers Association Ride for Life XXI dinner in Hershey, Penn. Ride for Life is the largest Harley-Davidson MDA fundraising event in the country, attracting thousands of motorcycle participants from a multi-state region. Last year the ride and associated activities raised more than $1 million for MDA programs.

Walker, who has nemaline myopathy and uses a power wheelchair, has entertained Jerry Lewis MDA Telethon audiences five times with his resonant baritone. The International Bluegrass Music Association named him its Male Vocalist of the Year in 2007.

Jeni Stepanek stays busy on multiple fronts

The late Mattie Stepanek was a beloved MDA National Goodwill Ambassador. Four years after his death at age 13 from dysautonomic mitochondrial myopathy, his mother Jeni Stepanek, who has the adult-onset form of the same disease, continues good works in his name.

In February she appeared at the annual Heartsongs Gala in Washington, D.C., an MDA fundraising event named after Mattie’s best-selling Heartsongs poetry series.

Mattie and MDA Vice President Jeni Stepanek, Ph.D.

 In March Stepanek delivered the keynote address at the first Peace Summit, part of the We Are Family Foundation global teen leadership initiative in New York City. Thirty teens from 19 countries — including former MDA National Goodwill Ambassador Luke Christie — gathered for the weeklong event to study the message of peace and hope that Mattie offered to the world in his final book, Just Peace (Andrews McMeel Publishing, 2006).

The following month, Stepanek presented the Mattie J.T. Stepanek Peacemaker Award to Deepak Chopra at the We Are Family Foundation Gala in New York, then returned in May to speak at Mattie Stepanek Day in Carlstadt, N.J. Still to come: the grand opening of Mattie J.T. Stepanek Park in Rockville, Md.

Stepanek attended these events, plus MDA fundraising appearances for the Harley-Davidson Motor Company and the International Association of Fire Fighters, and was awarded her doctorate from the University of Maryland. Her field of study deals with the subjective experiences and perceived needs of parents with children who have life-threatening neuromuscular diseases.

Rights advocate Wright on national television

The Montel Williams Show on Feb. 22 featured well-known minority and disability rights advocate TyKiah Wright as a finalist in the “Voices — One voice can lead to a chorus of change” contest.

The campaign annually recognizes women who have raised their voices to create positive change in society.

Wright, who has Charcot-Marie-Tooth disease, is the founder and executive director of WrightChoice, Inc. The Ohio-based organization recruits minority interns and those with disabilities for business and industry in order to utilize a well-educated but largely untapped workforce.

Last year, the American Association of People with Disabilities awarded Wright its Paul G. Hearne/AAPD Leadership Award that recognizes emerging leaders with disabilities. In 2006, she was named a Young Leader of the Future by Ebony magazine.

For her selection as a Voices finalist, Wright received $20,000 to help support WrightChoice.


Stanley Appel receives McGovern award

Neurologist Stanley H. Appel, chairman of MDA’s Medical Advisory Committee, MDA Board member, director of the MDA/ALS Center at the Methodist Neurological Institute in Houston, and a longtime MDA research grantee, received the the prestigious John P. McGovern Compleat Physician Award for 2008 on Jan. 25.

This national award, given by the Houston Academy of Medicine, recognizes a physician who embodies exemplary service to humanity and whose career reflects medical excellence, humane and ethical care, and commitment to the medical humanities.

Appel, who specializes in research in amyotrophic lateral sclerosis (ALS), as well as in the care of patients with this paralyzing and life-shortening disease, is co-founder and co-director of the Methodist Neurological Institute and a professor of neurology with Weill Cornell Medical College.

He currently holds two MDA research grants, one to study the protective or toxic properties of immune-system cells, particularly in ALS; and another to study the possibility of using stem cells to carry neurotrophic (nerve-nourishing) compounds to the spinal cord in ALS.

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