Parkinson's foe enlists Fox to take leading role

http://www.pressdemocrat.com/local/news/21fox_a1empirea.html

Celeb lends name, clout to advocacy group
May 21, 2000

  by SUSAN SWARTZ - Press Democrat Staff Writer

Starting this week, the Santa Rosa office of the Parkinson's
Action Network will answer the phone with a Hollywood
name: "Michael J. Fox Foundation for Parkinson's
Research."

And founder Joan Samuelson will be in Washington, D.C.,
at a Capitol Hill news conference and dinner Tuesday with
the "Spin City" TV star to announce the formation of the
new research and advocacy effort the two will team up on.

Both consider it a perfect match. The star provides the
celebrity clout and fund-raising ability that Parkinson's
advocates have long wished for. And Samuelson brings
expertise as a longtime lobbyist for Parkinson's funding and
research.

"I feel like I'm sitting at the feet of a master," Fox said in a
telephone interview.

Not only do the two have a mutual admiration, they both
have the disease, a neurological disorder that causes
tremors and restricts mobililty.

"With Parkinson's, you're off and you're on," Fox said.
"I've lived with Parkinson's for about 10 years and Joan a
couple years more." He said their symptoms are alike, as is
their dependence on medications that control their shaking
but take time to work.

"Sometimes Joan and I have morning meetings together
before our meds have kicked in," Fox said. "We're like a
couple of Keystone Cops. One or both of us can't open
our bottles of water or pick up papers. It's a comedy of
errors.

"But it's at those moments we feel the most simpatico and
our mission becomes clear. We have a big stake in this, but
it's also beyond us. There are a million others like us out
there."

Samuelson, who formed her Santa Rosa-based grass-roots
organization in 1991, will become the president and CEO
of the Michael J. Fox Foundation. The popular actor,
whose last "Spin City" segment airs Wednesday, will be
chairman of the board.

Asked why he chose to join with Samuelson's operation,
Fox said, "You sit in a room with Joan and she starts to
talk and she is the most compelling person. She has a sense
of purpose and commitment and she has a huge stake in
this, as do I."

Approximately 1 million Americans have Parkinson's, 40
percent of them under age 60. They include former boxing
champ Muhammad Ali, writer Pauline Kael and attorney
general Janet Reno.

"It's dazzling," said Samuelson, "having a partner who is a
mega mogul."

Following his initial impression of Samuelson, Fox said, he
looked into the Parkinson's Action Network, which is one
of four major Parkinson's groups but the only lobbying one.

"It's a quality organization with a good reputation and track
record," Fox said.

At the end of "Spin City's" one-hour finale Wednesday,
viewers will be invited to call a toll-free number, (800)
708-7644, which will link them to the Santa Rosa
operation for donations.

Samuelson's Santa Rosa office was putting together a
phone bank last week to handle the expected barrage of
calls.

"This will be big," said Parkinson's Action administrator
Brian Griffith. "They told us to expect at least half a million
phone calls."

These are heady times for Samuelson, who has been trying
to recruit Fox to Parkinson advocacy since the actor
announced in November 1998 that he has the degenerative
neurological disorder. Samuelson's first coup was to
convince Fox to appear in September before Congress,
and help her plead the case for more research funding for
Parkinson's.

The National Institutes of Health paid for about $78 million
in Parkinson's research last year, and advocates seek
another $75 million this year.

Fox talked about that first congressional hearing in a
Newsweek cover story last week, describing how he
realized the impact of his presence as he and a tearful
Samuelson walked down the hall.

Samuelson, 50, a lawyer, was diagnosed with the disease
when she was 37. She founded Parkinson's Action
Network chiefly to boost public awareness about the
disease and lobby for a greater share of the government
research pie.

Through the years, Samuelson has become a nationally
known spokeswoman for the disease, spending a third of
each year in Washington, D.C., and other time on the road
giving speeches and attending brain research conferences.

But there's never been enough focus on raising private
money for brain research, she said, and this is where
working with Fox will make the difference.

Following the Newsweek story and an appearance by Fox
on "20/20" last week, the Santa Rosa office was besieged
with phone calls.

"This is exactly what we hoped would happen," said a
jubilant Samuelson, "people calling and asking what they
can do to help."

The celebrity connections are already worth their weight in
promised gold.

"Everyone wants to help," Samuelson said. "Mike will call
me and say, 'Oh, I was talking to James Taylor ... or Elton
John ... or Sting and they want to know what they can do.
Oprah wants to know what she can do.'"

Samuelson said when the two talked in Washington last fall,
Fox told her to let him know what more he could do.

"I took that as a pretty clear invitation," Samuelson said. "I
broached the idea of combining his private fund-raising
effort in collaboration with our advocacy stuff."

Fox, 38, said he and Samuelson have a lot in common.
"Neither one of us are administrative types but we're
terrible at delegating. We both tend to want to do it all," he
said.

"We're both workaholics," agreed Samuelson, who said
that beyond their professional connection is a growing
personal one.

"He's a friend. I watch him on the TV interviews and I think
about the guy behind the celebrity. This is a real passage
for him."

She attended the final taping of "Spin City," and said, "I felt
almost like a traitor with people being so sad that he was
quitting the show, because it's almost like their loss is our
gain."

The actor said he will put his energies into working on the
foundation's Web site (michaeljfox.org), which won't be
operating until Wednesday, and "being part of the national
conversation" about Parkinson's, which he refers to as
"P.D."

As to whether he'll return to lobby Congress, he said, "I'll
leave the strategizing up to Joan."

The Fox foundation became a new organization by
absorbing the Parkinson Action Network. Samuelson sees
her relationship with Fox as a "partnership" and said her
organization smoothly became the Fox foundation by a
board action.

"There was no point in going out and creating a new
nonprofit organization," she said. "We already are one. So
the board met and we added Mike to the board and
officially changed the name."

Samuelson said the group will put together a much larger
staff than the current seven-employee Santa Rosa
operation, and create both an executive board and a
science board to award research grants.

"We still have a lot of the nitty-gritty to work out," she said,
including her salary, which with Parkinson's Action
Network is $76,000. She said the new board probably will
combine some of Fox's big-name friends with existing
Parkinson's Action board members.

For the time being, the foundation will continue to operate
out of its Third Street office in Santa Rosa, but the
headquarters eventually will be in New York City with
eparate offices in Washington and probably Sonoma
County.

"We have a geographical issue," said Fox, hinting that he
hopes to get his partner to move east. But Samuelson, who
lives in Healdsburg, vows to remain in Sonoma County.

"This place keeps me healthy," she said, even as she tried
to shut out the ringing phones to write her speech for
Tuesday.

"I'm not going to die of Parkinson's, I'm going to die of a
heart attack," she said with a sigh.

She was smiling.

--
Judith Richards, London, Ontario, Canada
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