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Parkinson's groups announce plan to merge early next year: advocates often sent conflicting messages.

Two leading Parkinson's foundations plan to merge forces, and officials hope combining their efforts will lead to better collaboration within the historically disorganized Parkinson's community.

The Miami, Fla.-based National Parkinson Foundation (NPF) and the Parkinson's Disease Foundation (PDF) in New York City, are scheduled to complete the merger by early 2003.

"The Parkinson's community traditionally has been somewhat congested with several very able and very effective organizations in different pieces of the turf doing somewhat different things," said Robin Elliott, CEO of the new organization, The Parkinson Foundation (TPF).

This is the second merger for PDF in less than five years. PDF and the Chicago-based United Parkinson's Foundation joined in March, 1999.

The new foundation, headquartered in New York, will begin with approximately $35 million in assets. Officials expect to receive some $20 million in contributions annually, according to a TPF fact sheet.

Job cuts probably won't take place in this merger because the organizations are "leanly" staffed and most functions are "complimentary, not duplicative," Elliott said. The new foundation will have approximately 30 employees. Most of the duplication and administrative saving is likely to be in areas of professional contract work, such as audits, legal issues, public relations and real estate, Elliott said.

The merger comes at a time when some leaders in the Parkinson's community are enthusiastic about the possibility of finding a cure and the federal government has increased involvement in recent years.

"The key to the whole thing is, in addition to the charities, the government has gotten more involved," said Joel Gerstel, executive director of American Parkinson Disease Association (APDA) in Staten Island, N.Y. "That's important -- similar to what happened with polio. When the government got involved, that's when they had a breakthrough on finding a cure for the disease."

APDA was established in 1961, and Gerstel has been with the organization in some way for 20 years. He said 11 government-established research centers across the nation, funded at $1 million a year for five years, is a major investment for trying to find a cure for the disease.

The National Institutes of Health (NIH), a federal government group, funds Parkinson's research and a myriad of other medical research programs.

NIH estimated that Parkinson's disease research will be approximately $199 million in fiscal year 2002 and $215 million in 2003, according to Audrey Penn, acting director of the National Institute of Neurological Disorders and Stroke, one of 27 institutes under NIH's umbrella. She made the comments during testimony at a United States Senate committee hearing during Spring, 2002.

Today, several Parkinson's foundations are working together on joint funding of research programs. But, collaboration and strategic alliances weren't always the case.

"I think of a time in the Spring, 1996, when I first joined this organization, when on a single piece of legislation on a single day, in a single congressional office, there were three different positions being advanced by the Parkinson's community," said Elliott, executive director of the soon-to-be merged PDF.

"Historically, the community has been fractured by the fact of multiple organizations," and the disease's nature causes people to remain isolated, said Joan Samuelson, president and founder of Parkinson's Action Network (PAN), an Alexandria, Va.-based advocacy group.

Samuelson, who was diagnosed with Parkinson's disease 15 years ago, believes the merger will help provide leadership.

The Parkinson's community has begun to find its voice in recent years, and has gained heightened influence on Capitol Hill thanks to PAN (founded in 1991), and the emergence of the Michael J. Fox Foundation for Parkinson's Research.

PAN helped Fox launch his foundation in 2000. Initially the two organizations merged, but later restructured into separate organizations, Samuelson said.

The two groups decided it would be better to operate separately, so PAN could focus on advocacy work and Fox's foundation could work on raising money and funding research.

The "day-to-day running of his efforts are really different than what we do everyday," Samuelson said. "He's (Fox) obviously a unique force. He really needs to drive that train."

The two organizations maintain a strategic partnership, and Fox does some advocacy work through PAN, according to a statement from Fox's foundation.

Fox had an obvious impact on Parkinson's awareness and education when he announced his diagnosis in 1998. His impact remains today, said Joyce Oberdorf, director of communications at Fox's New York City-based foundation. The release of Fox's memoir Lucky Man is increasing public knowledge and understanding of Parkinson's disease. Fox writes about how the disease affects him daily and his efforts to find a cure within 10 years through aggressive research funding.

"It is a classic case of a rising tide," Elliott said. "He (Fox) created a rising tide, and it raised all of us, not just his own foundation. That's a record that we acknowledge with, gratitude."

The forming Parkinson's Foundation plans to use PAN as its voice in Washington, D.C., and will provide some funding, Elliott said.

Elliott believes the newly formed Parkinson Foundation will build on momentum. "It will concentrate public attention, private dollars, scientific talent, national advocacy resources at a higher level than have been possible to date," Elliott said. "When you do that kind of thing, the dividends come. They come in more work, better work, more focused research, and a greater chance at a cure that is sooner."

At least one person doubts the new merger will have a dramatic impact on the Parkinson's community.

Since research is driven by scientific advisory boards, and both organizations have been doing research for years, and it's still "one and one," Gerstel said. He added that his association has pursued working with other groups for years and has an ongoing relationship with PDF and NPE

"We encourage everyone to work together because we're all in it to find a cure for this disease," Gerstel said.

That's important to Samuelson, who wakes each morning almost unable to move until her medication kicks in an hour later.

"It's a very exciting time for the whole community," Samuelson said. "And, it's a great place to be. That may sound strange, but I think revolutionary things scientifically and in their impact on people's lives, are going to happen in the next several years."
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Title Annotation:National Parkinson Foundation, Parkinson's Disease Foundation
Author:Jones, Jeff
Publication:The Non-profit Times
Geographic Code:1USA
Date:Nov 1, 2002
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