Friedreich's ataxia patient has goal to find a cure for his disorder

Reprinted by permission of The Argus
August 19, 2004

By Rachel McMurdie
CORRESPONDENT

FREMONT - Phillip Bennett, like many other 20-year- olds, likes extreme sports. He water-skis, goes white-water rafting and has even gone sky-diving a time or two.

But, unlike the typical young adult, he does so from the confines of a wheelchair.

Bennett has Friedreich's ataxia, a neuromuscular disorder that damages sensory and motor nerves, impairing his physical ability and speech. But it hasn't stopped this Fremont native from achieving his goals.

His latest challenge, however, isn't overcoming a physical obstacle or pushing the limits of his disability; it is his goal to raise $25000 to fund research for a cure for Friedreich's ataxia.

On Saturday, the first of what organizers hope will be an annual fund-raising dinner event will be hosted by the Muscular Dystrophy Association in conjunction with Bennett and his supporters. The proceeds from Sunset on Friedreich's ataxia - Fund the Cure will go directly to funds for research.

"I really want to get rid of this (disease)," he said. "Not just for me, but for everyone else, too."

For Bennett and those pulling for him, that reality might not be too far off. Although there is no cure, researchers in 1 0 years have found many of the genetic causes behind the disease and have created several successful treatments for managing muscle weaknesses and cardiac symptoms.

"They are so close to finding a cure," said Valerie Bennett, Phillip's mom. "He knows it's terminal if they don't find a cure, but we're all hoping they do."

After listening to top scientists and researchers last summer at an MDA conference, Bennett and his mother knew what they had to do. It was time to take what he calls, "a proactive stance."

She gathered a committee of helpers and contacted the MDA. He got to staff the phone lines.

"I don't like asking people out of the blue, “Can you give me money?” But I know most people are willing to throw in a bit; They just need to have an opportunity to do it," said Bennett, who along with three other Friedreich's ataxia patients will be an honoree at the dinner event .

People, it seems, are taking that opportunity. So far, the sponsors have netted more than $39,000 in donations, well beyond their goal - from local companies, local citizens, family and friends.

At his graduation from Mission San Jose High School in Fremont in 2002, Bennett received a standing ovation from his several hundred classmates. Even now, as a third-year psychology major at San Jose State University, Bennett says friends come to him for advice. It's good training for Bennett, who wants to become a counselor or psychologist after he graduates.

"I get a good feeling when l'm helping people and giving them advice," he said.

Now, people are focusing on helping Bennett and others with their battle with Friedreich's ataxia.

“This is going to be a phenominal event,” said Marylee Sheffer, a pastor at United Methodist Church, who is on Bennett's fund-raising team. "It's because the people who know him, love him and honor him and want to help."