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Parkinson's HelpLine

 

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New Strategic Directions for PDF

A Message from the Executive Director

For an organization that has the mission of serving people, reassessment should be a permanent condition. This is true especially true for an organization like the Parkinson's Disease Foundation, in a community where several organizations labor in different ways to sponsor scientific research, support patients and families and provide a public voice for the community as a whole.

For several months now, a special committee of our Board has been asking the question: What can we do, week-to-week and month-to-month, to advance the cure and help raise hopes and quality of life for those individuals and families who live with Parkinson's? The discussion has been focusing on four principles.

First, build on your strengths. For PDF, our oldest and greatest strength has been the movement disorder program at Columbia University, one of the world's most venerable and influential centers for Parkinson's research and leadership training. Today, Columbia remains a major source of scientific ideas, both bench and clinical, and perhaps the leading center for training movement disorder leaders around the world. Our Board's approval of a $2 million grant to fund the scientific investigations in Parkinson's at Columbia University in 2003 is testimony to their confidence in this excellence. Building on this kind of strength has also meant funding, for two other major centers: Rush Presbyterian St. Luke's Medical Center in Chicago and Cornell-Weill Medical Center in New York.

Second, seek out and learn how to harness those strengths. When these strengths include scientific expertise and high standards, they can be utilized to serve the community in new and important ways such as providing information, education and support through publications audiovisual media and the website. Our aim is to provide the best and most accessible portfolio of informational materials on managing Parkinson's - including publications linked to specific stages of the disease (e.g., the point when PD is diagnosed) and meeting special needs (e.g. exercise).

Third, be alert for new opportunities. At this time, the most challenging and important of these is the possibility of increasing the participation of our community in clinical trials. No new medication or other therapy will make its way into the medicine cabinets of PD patients unless the community participates sufficiently in the research that makes these interventions possible. At last count, less than one-half of one percent of the PD population were participating in clinical trials. A huge opportunity exists to raise this level of participation, by raising awareness and education - not only among patients and families, the primary audience, but among doctors and other health professions. Our end-goal is to expedite the processes involved in making new treatments available to patients.

Finally, learn to collaborateÖthen collaborate more. Our efforts over the coming years, will involve learning to work with colleague organizations that are doing important work in research, in patient services, in public advocacy. This means both supporting other organizations in areas for which they have special expertise - for example, our support of the Parkinson's Action Network in public advocacy and our joint ventures with the Michael J. Fox Foundation in certain areas of research. It also means inviting other organizations to join us in our own ventures -- such as some planned video-print educational packages and the clinical trials awareness project -- where the expertise and community infrastructure of the American Parkinson Disease Association, the National Parkinson Foundation and the Parkinson Alliance can be crucial.

The job we have to do is bigger than any of us can do alone. At PDF, we are committed to bringing the best we have to the best collaboration we can build - with organizations, yes, but also with the individuals and families who make our work possible through their gifts, their advice and their support.