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Hope Award

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Muscular Dystrophy Telethon Raises New Hope

Mattie Stepanek and Jerry Lewis need your help this weekend fighting muscular dystrophy.
By John Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

A popular bumper sticker proclaims, "Practice random acts of kindness." But there's nothing haphazard about Jerry Lewis' generosity of spirit. For 38 years Lewis has been single-mindedly focused on perfecting the art of compassion as the driving force behind the Muscular Dystrophy Association telethon.

And his "kids" are enjoying ever-healthier and longer lives because of it.

Just ask best-selling poet and the MDA's National Goodwill Ambassador, Mattie Stepanek, who was born with dysautonomic mitochondrial myopathy (DMM), a rare neuromuscular disease related to muscular dystrophy.

"The donations people make are so helpful to us all," Stepanek says. "This money buys equipment like wheelchairs and leg braces that help us get around. It raises money for teen meetings and support groups which are a lot of fun and help us talk about our feelings. And it goes to the MDA summer camp which is a week of pure heaven for any kid with any type of muscular dystrophy."

MD is a genetic and neuromuscular disease that is characterized by progressive muscle wasting and weakness. There are actually nine major types of MD which affect about 250,000 Americans. The most common adult form of the disease is myotonic MD which affects as many as 30,000 Americans. Duchenne MD is the most common childhood form of the disease and is probably the one most people are familiar with from the telethon. It is an X chromosome linked disease that affects approximately 12,000 males in the US and is typically fatal by the early to mid twenties.

According to Stepanek, the most important thing is that the money raised supports research.

"It funds research for current treatments which help keep us alive and ultimately, a cure," adds Stepanek, who will appear during the broadcast via a satellite feed. "Because one day there will be a cure for all the types of muscular dystrophy."

And that is the MDA's game plan.

"That's always been the plan and believe me Jerry had a vision," says former Tonight Show icon Ed McMahon. "This is the telethon's 38th year as a national event on Labor Day Weekend and I'm hoping we break $60 million this year because that would be a milestone."

Network of love

McMahon says Lewis even had a plan for getting him involved.

After guest hosting The Tonight Show, the two entertainers became friends and Lewis asked McMahon to stop the next evening to help at the telethon.

"I thought I was just going to stop by and make an appearance but as soon as I sat down with him he says he has to go to the bathroom," McMahon recalls. "And he left me.  So I had to announce the next act and the next and the next. And I finally look over and he's standing there in the wings with his arms folded and he just motions for me to keep going. So I did four hours. And now I've been anchoring the show for 36 years."

The show airs for nearly 22 straight hours starting at 9 p.m. ET Sunday, August 31.

Broadcast times across the MDA's "Love Network" of 200 television stations vary so viewers should check their local listings. The Telethon also can be seen on the Internet at www.mdausa.org.

"The important thing to know is that this is a disease that can strike anyone," McMahon states. "It can strike randomly or devastate entire families like Mattie's.  He has a rare form of this disease and is on a ventilator and in a wheelchair. His mother has the disease and three of his siblings died from it."

"My health has been okay," says Stepanek, who at 13 has published five books and is a passionate advocate for world peace. "We jumped one hurdle recently but now I have an iron overload from all of the transfusions I've been getting. I have to start a medicine that will help decrease my iron level but it also has many possible side effects that could be serious."

Despite this Stepanek seems unstoppable in his faith and hope and credits his belief in God's will and the love of his dog Micah for keeping him going every day.

"Micah is always helping us like opening doors and picking things up," Stepanek says. "But the fact that he loves me so much and will come running to me whenever he can is the best feeling. I find so much love and hope in having a friend as close as him."

And there is reason for more hope than ever before.

Emerging therapies

"What I most enjoy is that every year one of our doctors gets up and tells us what breakthroughs we've had this year," McMahon reports. "We're beginning to develop new therapies that hold great promise."

"There are also less exotic therapies we call 'the low hanging fruit,'" reports Sharon Hesterlee, director of research and development for MDA. "These are already approved drugs that are on the market for other disorders and over-the-counter supplements that have been tested in mice that have Duchenne."

Hesterlee says that several of these drugs and supplements, including creatine, Co-enzyme Q10, glutamate and prescription drugs like albuterol and  prednisone, have been shown to slow down the progression of the disease in mice and are in clinical trials now. 

And gene and stem cell therapies have both enjoyed recent breakthroughs.

"An Italian group has had success with getting stem cells to go into the muscle and form new muscle tissue in mice," says Hesterlee, who holds a PhD in neuroscience from University of Arizona. "This is a big step forward because before it wasn't working very efficiently."

In gene therapy the challenge has been to fit the large dystrophin gene into a small viral particle adept at entering cells.

"We finally figured out how to chop down the gene and make it smaller using only the essential part of the gene and make what amounts to a mini-dystrophin," Hesterlee states. "It works almost as well as the original and now fits into a viral particle."

Hesterlee stresses that the MDA has never needed money more than now.

"We have about 400 projects with more lined up just waiting for money," Hesterlee reports. "The money is critical right now.  The clinical trials we are getting into now are extremely expensive and with more money we can do more and do it faster."

"This isn't impossible -- a cure could be found," McMahon says. "That's what keeps us going."

"I hope that people are motivated by our stories," Stepanek says. "I don't want it to be a pity story - no one does - we're loving life but we need your help. We have to get out there and say, 'HEY! We're Jerry's kids. Please help us!'

"I hope people do the best they can to help us," Stepanek adds. "And we'll do the best we can to help them smile."

For more information, click here. (Muscular Dystrophy Association)

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 8/30/2003  -  John Morgan & Stephen A. Shoop, M.D.

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