Family fights to find nerve illness cure

[Guest guest]

Family fights to find nerve illness cure

http://www.centredaily.com/116/story/410214.html

Jim Chernega uses a trick at drive-through windows so he won't drop

his change on the ground.

Jim Chernega talks about his illness and finding a cure for CMT on

his parents' couch with his mother, Joan, in State College.

He wraps a rubber band around his fingers to keep them together,

because the muscles in his hands won't do it for him.

Chernega, of State College, has Charcot- Marie-Tooth disorder, a

genetic illness in which nerves in the extremities slowly degenerate

and cause muscle atrophy.

Since he was diagnosed two decades ago, Chernega, 43, has watched as

the disease finally gained recognition through efforts such as the

recent television and radio ads that featured Penn State football

coach Joe Paterno talking about the symptoms of the disorder.

That public awareness has meant more support groups, new information

and increased interest from researchers.

" I'd like to see a little more help for people, " Chernega said. " At

first I was told there's no treatment and no cure, but then you find

some doctors who will say, `We have no cure but we can still help

you.' "

Now he and his family are throwing their support behind an effort to

find that cure.

Chernega's parents, and Joan, also of State College, recently

donated $100,000 toward new research that aims to find new

medications for the most common type of CMT and, eventually, a cure.

The effort is being led by the Charcot- Marie-Tooth Association,

headquartered in Chester, and will take the effort of researchers and

scientists from around the world in the fields that include

immunology, genetics and molecular biology.

To fund the undertaking, the CMTA plans to raise $10 million by 2010

through events and donations with a goal of finding a cure in 10

years.

The Chernegas hope their donation will encourage others to give to

the research. " As parents, you think you want people to get a little

help so they don't have to struggle on their own, " Joan Chernega

said.

She said when her son was young, he continually sprained his ankles.

Jim Chernega thought he was simply not the athletic type.

The family learned the true cause of the problems through much of

their own research because little information was available during

that time.

CMT affects everyone differently, and can cause imbalance, loss of

sensation or deformities in the lower legs, feet, arms and hands.

Jim Chernega now uses leg braces and a cane, or sometimes crutches,

to help him walk.

CMT is believed to be the most commonly inherited neuropathy, and

doctors think it affects one in every 2,500 Americans. It could be

more common, but there's never been a prevalence study done in the

United States. That's why the CMTA has also commissioned an effort,

led by Dr. Demayo, of stown, that will try to pinpoint

how many people have the disorder in Allegheny, Bedford, Blair,

Cambria, Clearfield, Indiana, Somerset and Westmoreland counties.

Those findings could lead to a nationwide study.

CMT, which isn't usually life-threatening, hasn't gotten as much

attention from scientists because it receives less funding than

similar illnesses that are life-threatening, CMTA Executive Director

Hagins said.

Hagins said he understands why, but believes now is the time to focus

on CMT.

" When you fund direct research in an organization you get attention, "

Hagins said. " We have the scientists and we have the genes and this

is where it gets exciting. "

There are now 33 specific genes known to cause the disorder.

The study will test over-the-counter drugs already available to see

which ones can slow or reduce the over-expression of the cell that

causes the most common form of CMT.

" In my wildest imagination I'd like to be able to take a pill and get

the nerve conduction back, " Jim Chernega said.

For now, he's focused on living life as normally as he can, and wants

to get the word out to people who may have symptoms to get tested.