Better Safe Than Sick Get Your Flu Shot

Influenza can be very dangerous for people with neuromuscular diseases. Thats why MDA is once again offering free flu shots for those registered.

Flu shots are available through your local MDA clinic, or MDA will pay for a local doctor to administer the shot. Call your local MDA office to find out more. Those taking immunosuppressant drugs like prednisone should consult with their doctors before getting flu shots.

Nominees Sought for Achievement Awards

MDA is seeking nominations for its 13th annual Personal Achievement Awards program. Given on local, state and national levels, the awards recognize the accomplishments and community service of people with neuromuscular diseases.

Nomination forms and guidelines are available at local MDA offices, and the deadline is in late January. Anyone can nominate a candidate friends, family members, colleagues, MDA staff.

Read the profile of the 2004 national award recipient.

Annual Report Available

MDAs 2002-2003 Annual Report is now available at MDA offices. It contains the audited financial statements for the Association, covering the fiscal year that ended March 31. The report also gives a general overview of operations during the year, including advances in research and services provided.

The report lists the Associations Board of Directors, officers, national vice presidents, clinic locations and research grantees, along with the membership of MDAs advisory committees.

Harley-Davidson Update

Walter Anderson, with microphone, greets participants in the Parade of MDA Heroes at the Harley-Davidson birthday bash. At left are Alexis Villa and David Cogliano, who were featured in Harley-Davidson centennial materials.

Labor Day weekend marked the finale of a very special celebration by one of MDAs largest sponsors, the Harley-Davidson Motor Co. Some 10,000 Harley-Davidson enthusiasts gathered in Milwaukee for the companys 100th anniversary bash, the culmination of 14 months of celebrating and raising money for MDA through the international Open Road Tour.

As part of the anniversary, the Parade of MDA Heroes honored 240 riders nationwide who each raised at least $5,300 for MDA in the past year. Leading the parade were Walter Anderson, an MDA vice president and publisher and CEO of Parade magazine, and 7-year-old Alexis Villa, MDAs California Goodwill Ambassador.

Harley-Davidson surpassed its $5 million goal for MDA and presented MDA with a check for more than $7 million, accepted by Alexis. The momentous occasion was televised on the Jerry Lewis Labor Day Telethon.

Loss of a Hero

Former MDA National Goodwill Ambassador Matthew C. Brown died July 18 at age 35 as the result of spinal muscular atrophy.

Serving as National Goodwill Ambassador in 1977 and 1978, Brown, of Eastanollee, Ga., made public appearances across the country as an MDA representative. He was also interviewed on the national broadcast of the Jerry Lewis MDA Telethon for several consecutive years, during which he charmed the national audience.

Brown remained an active MDA volunteer into his adulthood. In 1995, he published his autobiography, Crying in the Night. Browns optimism, sense of humor and dedicated spirit will be missed.

Telethon 2003 Soars to New Heights

MDAs 38th Jerry Lewis Labor Day Telethon was another record-breaker with $60.5 million in pledges and contributions more than $2 million over last years total.

Star Jerry Lewis led a team of dedicated performers and MDA representatives who kept tens of millions of viewers moved, informed and in a giving mood. Click here to view a few memorable moments.

Meet Kenny Chapman

by Kathy Wechsler

Chapman makes some new friends in Las Vegas.

For Kenny Chapman of Florence, S.C., giving up is not an option.

Despite a diagnosis of Friedreichs ataxia, Chapman, 32, has worked as a fitness leader at McLeod Health and Fitness Center for three years and doesnt let a little bad balance and coordination stop him from achieving his fitness goals.

The Gym

"I dont think Id be able to do half the stuff I can do if I didnt work out," said Chapman, recipient of MDAs 2002 Personal Achievement Award for South Carolina. Working out has allowed him to gain upper-body strength, build his lower body and maintain his independence, he says.

Beginning early each morning with stretching exercises, Chapman does push-ups and stomach crunches for about an hour. "I cant believe how strong I am some days," Chapman said. "Some people dont want to shake hands with me."

Chapman, who was found to have FA in 1992, has been working out for six years and is dedicated to building muscle and staying strong. Hating to lose, he asked himself, "Am I going to sit here and let this stuff beat me up, or am I gonna beat it up?"

Chapmans answer was made clear when he was hired at McLeod Health and Fitness Center, where hed been working out for nine months.

As a fitness leader, Chapman moves about the two-story building, assisting people with the exercise machines and answering questions about health, fitness and nutrition. He was certified as a personal trainer in 2001.

Working mornings, Chapman spends his afternoons working out on machines and using free weights to build his muscles. There are two other wheelchair users who frequent the gym.

The Man

	A buff Kenny Chapman attended modeling school.

For Chapman, having FA is just one of those things. He says that his enlarged heart hasnt been a problem, and he finds the best way to deal with the disease is to learn to live with it.

And thats exactly what he does. Chapman throws his titanium manual wheelchair into the back of his Toyota 4-Runner, straps it in place and holds on to the vehicle as he shimmies down to the drivers seat, where he "jumps in and takes off."

His truck isnt adapted with hand controls because "Im trying to keep these old legs going."

He believes working out has improved both his lower and upper body. "My legs are three times stronger than they ever used to be," said Chapman, who used to race bicycles and play football when he was younger.

Now living with his mother and stepfather, Chapman feels fortunate that he was able to have those experiences. "Every now and then I get out the pictures [of his athletic days] and look at them," he said. "I cant be sad about it because I got to do it all. I got to score touchdowns."

In April, Chapman participated in the Ninth Annual Southeastern Regional Games at Myrtle and won in his class in the shot put, javelin and discus. He also enjoys traveling, especially to Las Vegas, and going to the movies with friends.

The Association

Chapman is a regular at MDA support group meetings in Florence where he enjoys getting together with others, sharing interesting stories and laughing. MDA made him realize that having FA is "not the end of world," he said.

Besides offering moral support, MDA has helped Chapman purchase a new wheelchair and given him a great opportunity for social activities. Chapman participates in MDA Lock-Ups, won his states Personal Achievement Award and met the governor of South Carolina.

Twice a year, Chapman makes the two-and-a-half-hour drive to the Charleston MDA clinic to see his neurologist, Timothy Carter, who, together with the physical therapist, is impressed by Chapmans exercise regimen. Hes been told to be careful not to lift too much. (See "As the Wheel Turns" for more about important precautions before beginning an exercise program.)

"I kind of do my own stuff," said Chapman. "I cant sit in this chair and waste away. I have to be building something."

Even when life is difficult, Chapman has an optimistic outlook and continues to win his battle with FA. His disease has taught him not to take anything for granted.

Two and a half years ago Chapmans father passed away from brain tumors. His son said, "Cancer is rough stuff. At least I dont have that. This [FA] is no problem to fight."