http://www.newsadvance.com/MGBA6ZXCDUC.html
Nov 22, 2001 - 09:08 PM
Ellen Connelly Butterworth struggled
for three years with symptoms she didn't understand.
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
Copyright ©2001 The News &
Advance
By Cynthia T. Pegram
The News & Advance
Then about a year ago, after the
Lynchburg native lost her ability to speak, neurological studies turned
up the answer - multiple sclerosis.