ARTICLE: NEBRASKA: City Couple Pushes For Funding Boost In Muscle Diseases
Columbus Telegram, NE
By JULIE BLUM, Telegram Staff Writer

May 14, 2004

COLUMBUS - A couple from Columbus will be pushing for more federal funding for neuromuscular diseases this weekend.

Larry and Sharon Kuncl will be representatives for Nebraska during the National Amyotrophic Lateral Sclerosis
Association Advocacy Day and Public Policy Conference in Washington, D.C.

Their five-day trip will be spent discussing the issue with members and representatives of Congress and about
increasing federal research dollars for neuromuscular diseases including ALS, or what is more commonly known as Lou
Gehrig's disease.

ALS is a fatal disease that destroys the brain's ability to communicate with the muscles. After diagnosis, life
expectancy is usually 2-5 years. There are 600 people affected by ALS in Nebraska and more than 30,000 affected with it
nationally.

Larry is one of those people. For the last 10 years, he has exhibited signs of the disease, including weakness in his
arms, a common symptom of ALS, Sharon said. Other symptoms can include stiffness, muscle twitches, cramping and
difficulty speaking and swallowing.

Unlike those suffering with the disease, Sharon said Larry, 65, has been able to lead a healthy, productive life
without much progression of his symptoms.

Since those symptoms appeared, the Kuncls have been actively involved in ALS awareness. Last year Sharon served as the
event leader for the ALS walk in Columbus, which raised $28,000 for research of the disease.

The opportunity to talk to lawmakers such as Congressmen Doug Bereuter, Lee Terry and Tom Osborne and possibly to U.S.
Sens. Ben Nelson and Chuck Hagel about the need for additional research money is very important, Sharon Kuncl said.

One reason is because neuromuscular disease research does not get much federal funding compared to the money that goes
into researching other diseases like cancer and heart disease, Sharon said.

Unlike the American Cancer Society, which is an organization that raises awareness for all types of cancer, Sharon said
there really isn't an organization that does the same for the 80 neuromuscular diseases that include ALS, multiple
sclerosis, Parkinson's and Alzheimer's.

The short life expectancy of someone with one of those diseases, specifically ALS, also prohibits awareness as well.

"A lot of people don't realize this. We have a lot of cancer survivors and heart (disease) survivors and they are
working trying to find a cure. But we don't have any survivors of ALS and MS," Sharon said.

There have been advances in care passed by lawmakers in the last six years since representatives from the ALS
Association-Keith Worthington Chapter's Nebraska office have been speaking in Washington. Some of those advances
included the passage of the 24-month Medicare waiver for ALS patients, increase in funding by the National Institutes
of Health, the inclusion of ALS in the Department of Defense's medical research program and a presumptive disability
ruling from the Social Security Administration, according to an ALS Association press release.

The goal of the Kuncls' trip will be to continue to raise awareness and also to increase the federal funding for ALS.
Currently, research for neuromuscular diseases receives about half a billion dollars in federal funds, Sharon said. The
couple hopes to boost by 8 percent the money from that total that now goes toward ALS research.

Even if they are successful in getting those extra funds, finding a cure for the disease could be years away.

Sharon knows that, but she said it is crucial to continue to fund research because steps need to be taken to find out
more about the disease. That needs to be done not just for her husband, but for those who may be struck with the
disease in the future.

"A cure is not likely in my lifetime. But finding the (cause) is," Sharon said.

Reach Julie Blum at 563-7535 or [log in to unmask]

SOURCE: Columbus Telegram, NE
http://www.columbustelegram.com/articles/2004/05/14/news/news3.txt

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