The 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 by funding promising scientific research while supporting people living with Parkinson’s through educational programs and services. Since its founding in 1957, PDF has dedicated over $90 million to fund the work of leading scientists throughout the world and over $37 million to support national education and advocacy programs.
Hallmarks of PDF’s Work:
- The quality of the research that we support;
- The effectiveness of the education and advocacy programs that we deliver;
- The integrity of our fiscal and fiduciary standards and practices;
- The transparency and accountability of our operations;
- A spirit of teamwork that ensures that we collaborate and coordinate with other organizations — both to get the job done and to minimize the duplication of services.
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.
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, available at (800) 457-6676.
- 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.
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 and care partners to influence research and speed new and effective treatments through our Parkinson’s Advocates in Research program.
- Facilitating conversations between the Parkinson’s disease community and researchers on clinical trial outcomes and implications through roundtables and discussion forums.
- Offering 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.