East Amherst woman spearheads benefit
SOMEONE YOU SHOULD KNOW
by JILL SCHMELZER

Barbara Field

When Barbara Field and her siblings got the autopsy results after their father died in 1988, tests showed what they had suspected all along: Huntington's disease was the culprit.

Back then, little was known about the debilitating killer, and in 19 years, not much progress has been made.

The disease attacks the brain, eventually leading to the inability to control movement, swallow, talk or breathe. Victims lose the ability to control emotions and often suffer mood swings, Field said.

There is a high suicide rate for people with the disease, which Field said is in part because victims lose all independence.

In fall 2004, the East Amherst resident began experiencing symptoms similar to what her father went through. Her arm muscles would involuntarily move, and after a series of tests, Field got word of her fate. She had inherited the gene that causes Huntington's, and she, too, would begin to lose control of her life.

"It was obviously devastating to me and my family," she said. "The saddest part is my sister, Cami McLaughlin, also has it."

Field had spent most of her professional career in the Ken-Ton Union Free School District and at the time of her diagnosis was principal of Kenmore East High School.

In January 2006, Field took a medical leave of absence from her position because the stress was not beneficial to the progression of the disease.

She had to make a decision - stay at a job she loved or prolong the effects of Huntington's. She retired in July of that year.

Field began a workout regimen that was recommended by her doctors and changed her diet.

"I've always been a healthy person, but I wanted to develop as healthy a lifestyle as I could," she said. "It's been a great year. The neurological disease has not progressed."

She noted that each case is different, and her father lived with the disease for nearly 20 years. He died at 73.

Since being diagnosed, Field has participated in experimental drug studies at the Huntington's Disease Society of America Center of Excellence at the University of Rochester. Thus far, she has taken part in a six-month, phase-two study, which explores a patient's tolerance to the disease. It proved to be ineffective.

Next, she will begin a stage-three study, which will explore an experimental drug's effectiveness, but so far no treatment or cure for the disease has been found.

Children of parents with Huntington's have a 50-50 chance of inheriting the disease, Field said.

"I don't have children, but the tragedy is that my sister has two," she said. "My nephew Kyle just got married and wants to have four children."

Field noted that she also has a younger sister who has experienced some involuntary symptoms in her arms but has not been tested, as well as a brother who does not have the genetic gene.

For Field and her younger sister the disease stops in this generation, but for McLaughlin and her children it could be passed on.

There are 30,000 Americans who suffer from the disease and another 150,000 are at risk.

"People know nothing about it," she said. "There is no Michael J. Fox raising awareness and money to find a cure."

Field and her former colleagues have decided to take matters into their own hands and begin raising money and awareness about Huntington's Disease.

They have raised more than $20,000 for research and will hold a three-mile walk-a-thon at 9 a.m. Saturday, Sept. 29 at Meadowlakes Park, 8550 Clarence Center Road, Clarence Center. It will be an annual event for the next three years.

"This year is about raising awareness; then it will be about raising more money," she said.

"It's been so helpful to have a goal," Field said.

For more information, call Celeste Kray at 633-4586 or e-mail wnyteamhope@gmail.com.

For more information about HDSA, contact Mynelly Perez, manager of Special Events & Development, by e-mailing mperez@hdsa.org.

If you have a suggestion for someone to feature in this column, send it to Jessica L. Finch, Amherst Bee, associate editor, P.O. Box 150, Buffalo, N.Y. 14231-0150, or call 204-4917.