Parkinson's Disease Foundation
The Parkinson's Disease Foundation (PDF) is a leading national presence in Parkinson's disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson's disease (PD) by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson's, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $80 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world.
At the heart of PDF's work is the participation of people with Parkinson's. Whether it is through our People with Parkinson's Advisory Council, which advises us on all projects, or the Clinical Research Learning Institute, which trains people with PD to play a part in clinical research - the perspective of people living with Parkinson's ensures that our work is on target and meets the needs of the community.
Research
Central to the mission of the Parkinson's Disease Foundation (PDF) is funding research of the highest caliber. Through our diverse research programs, there is a single underlying objective: to identify and support the most promising Parkinson's disease science by:
• Funding select teams specializing in Parkinson's research at major academic centers including Columbia University Medical Center in New York City; Rush University Medical Center in Chicago; and Cornell Weill Medical Center in New York City.
• Supporting individual scientists, all over the world, conducting pioneering research in its earliest stages through our International Research Grants Program (IRGP), which provides two-year grants to promising researchers working to advance the science of Parkinson's disease.
• Encouraging young scientists and clinicians to devote their talents to the study of Parkinson's by offering mentored fellowships, training opportunities and career development awards.
• Collaborating with other organizations on novel joint projects that promote the development of new Parkinson's disease treatments through our Advancing Parkinson's Therapies Innovations Grant.
Education
The mission of the Parkinson's Disease Foundation is not only to pursue the cure for Parkinson's but also to provide assistance to the people who live with the disease. A top priority for PDF remains the dissemination of accurate, accessible information about Parkinson's to people with the disease and their families. Through our innovative educational programs, PDF remains a trusted source of Parkinson's information by:
• Providing information and education to people with Parkinson's and their families. Through our Parkinson's Information Service (PINS), a “one-stop shop†for the Parkinson's disease community, our team of information specialists can answer questions about Parkinson's via our toll-free helpline, (800) 457-6676, and our “Ask the Expert†web service.
• Developing an extensive line of print, video and online educational materials, based on needs expressed by the Parkinson's community.
• Raising public awareness of clinical trials. In collaboration with other patient advocacy organizations, PDF leads PDtrials, an awareness and education campaign designed to raise awareness of clinical trials of potential Parkinson's disease treatments.
• Exploring issues relating to the quality of life among people who live with Parkinson's that include sponsoring research on related issues and collecting and disseminating information on community resources.
• Leading the 2006 World Parkinson Congress, an event which brought together over 3,000 scientists, researchers, people living with Parkinson's, caregivers, members of the media and industry representatives in an international forum to discuss the best scientific discoveries, medical practices and caregiver initiatives.
Advocacy
For more than a decade, the Parkinson's Disease Foundation has assumed the role of public advocate on behalf of, and in collaboration with, people with Parkinson's, their families and caregivers.
• Advocating for the interests of the Parkinson's community with government, primarily by providing significant financial and other support to the Parkinson's Action Network (PAN).
• Working, under the umbrella of our Advancing Parkinson's Therapies Initiative, to bring better therapies to market more quickly by supporting advocates in their individual efforts to influence change and by facilitating conversations with researchers on clinical trial outcomes.
• Launching the People with Parkinson's Advisory Council, in spring 2006, to provide the patient perspective to our program development and priority setting.
• Reaching out to media on healthcare issues and helping to position the interests of the Parkinson's community front and center on these and related issues.
• Training people with Parkinson's to educate and empower the broader community about the importance of Parkinson's clinical research through our Clinical Research Learning Institute, an annual multi-day educational seminar.
• Facilitating conversations between the Parkinson's disease community and researchers on clinical trial outcomes and implications through roundtables and discussion forums.
• Offer technical consulting and financial support to clinical research advocacy projects led by people with Parkinson's.
• Leading the formation of the New Yorkers for the Advancement of Medical Research (NYAMR), a coalition of New York State-based disease advocacy groups, university research centers and biotech industry leaders. This organization led the successful charge to secure state support for scientific research involving embryonic stem cells and other DNA therapies. On April 1, 2007, state leaders committed a total of $600 million to support this initiative.
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To learn more about PDF and our programs, please download our 2008 Annual Report.
http://www.pdf.org/pdf/2008_Annual_Report.pdf
For more information about PDF, please contact us at (800) 457-6676 or info@pdf.org