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 [log in to unmask] Today’s Research... Tomorrow’s Cure