Phillip Bennett

The Argus (Fremont, CA)

August 20, 2004 Friday

BYLINE: 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 skydiving 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 $25,000 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 di-

rectly 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 10 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 $30,000 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 I'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 phenomenal 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."

Tickets for dinner and a night of entertainment,
including live music and dancing at the Sunset Palms
Estate, a private home in the Fremont hills, are $100
for individuals and $75 for students. Contact Kim
Blakiston, [925] 803-1100 for more information.