More MS news articles for Nov 2001

Lynchburg native searches for cure, cause for disease

Nov 22, 2001 - 09:08 PM
By Cynthia T. Pegram
The News & Advance

Ellen Connelly Butterworth struggled for three years with symptoms she didn't understand.
Then about a year ago, after the Lynchburg native lost her ability to speak, neurological studies turned up the answer - multiple sclerosis.

As hard as it was to get the diagnosis, it was easier than living without knowing what was happening.

"I went through 14 doctors in different parts of the world," said Butterworth, who now lives in Ponte Vedra, Fla. "It was through an MRI that it was discovered to be MS."

Butterworth wants more than just trying to live comfortably with an illness, however. She wants a cure for MS. And she quickly found out that no one knows the cause.

So she launched the "MS Cause and Cure Foundation" earlier this month after she was told by a specialist, "If I wanted to find a cause, search for people who think outside of the box."

"That's what my foundation is set up to do - look at different things that could cause a person to have MS."

Butterworth is setting up a review board that will evaluate research projects and fund those seeking the answer in unique routes.

Multiple sclerosis attacks tissue that insulates nerves in the brain and spinal cord, interfering with the transmission of nerve impulses. The destruction causes a hardening (sclerosis) in scattered patches (multiple).

The result is an unpredictable pattern of disability and a wide variety of symptoms than can include paralysis and blindness. More than 300,000 people have MS, which strikes more women than men, and most often those between 20 and 40.

"I know for a fact that it's been with me for three years. Who knows how long I've had it," said Butterworth in a telephone interview. Dizziness, weakness and fatigue became part of what had been a high-energy life.

Butterworth said it helped to have "a doctor I really believed in who told me to tough it out. To keep moving," she said. She was used to working hard, having plenty of energy resources to draw on. And then she couldn't anymore.

Her words began to slur when she spoke, then she couldn't speak at all. "I knew in my mind what I wanted to say, I just couldn't say it - it was like, interrupted," she said.

The first diagnosis was stroke. But a scan using a high-contrast injectable dye showed areas in the brain that could only be MS, she said.

Two weeks later, in the unpredictable way of MS, her ability to speak returned. She is also on daily injections of one of the three main drug treatments for MS.

Butterworth, one of five children of Catherine and William Hatcher Connelly of Lynchburg, is a 1965 graduate of E.C. Glass High School and a graduate of James Madison University.

Catherine Connelly says her daughter was always "a real go-getter." That's not too unexpected for a girl whose dad, now 94, was once the physical education instructor for all the area's elementary schools.

"She has done a remarkable recovery with these medications," said Catherine Connelly.

Butterworth, a former teacher, became part of the computer industry in its early years, but had to relinquish her career as a result of the MS.

"Now I'm stepping back. I've made a whole lot of money - and I'm able to turn it back to helping with this disease."

Stuart Fauber, a longtime Lynchburg banker, says he thinks Butterworth can make her goal. He does have a slight bias, however - she's his sister-in-law.

"Ellen is passionate about whatever she gets involved in," Fauber said. "She got into the computer business and did extremely well."

"With the passion she has, whatever project she's working on at the time will probably be successful, if not in finding the cure, finding great improvements in the treatment of MS.

"She has the capability to be really successful with this foundation."

Butterworth registered the foundation with the state of Florida in August.

So far, the funding for the MS Cause and Cure Foundation, said Butterworth by e-mail, "is from donations from friends in the computer industry, family members, fund-raising events in addition to a personal contribution in excess of $1 million.

"The projects that our advisers are currently considering funding range from $250,000 to $725,000 per request."

Dr. Gary L. Winfield, a Jacksonville, Fla., family practice physician, is her medical adviser and has worked with her for the past year. "She has excellent prospects at making real headway," he said.

"There are other physicians involved in this," said Winfield. They will be looking at the proposals as well as trying to coordinate some of the efforts, he said, "as a team."

And Butterworth is aiming for a stellar list of reviewers for the projects.

"I've been fortunate to meet so many people all over the world. They want to help me."

The MS Cause & Cure Foundation can be reached at 2455 South Ponte Vedra Blvd., Ponte Vedra Beach, Fla. 32082

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