| Founder(s) | William Black |
|---|---|
| Founded | 1957 |
| Location | New York, New York |
| Key people | Robin Elliott, Executive Director |
| Area served | United States |
| Focus | "Parkinson's disease research, education and public advocacy"[1] |
| Website | www.pdf.org |
The Parkinson's Disease Foundation is a leading national presence in the United States in Parkinson's disease research, education and public advocacy. PDF funds scientific research to find the causes of and a cure for Parkinson's. PDF also offers educational programs and support services for people with Parkinson's and their loved ones.
Since its founding in 1957, PDF has funded over $90 million worth of scientific research in Parkinson's disease, as well as over $37 million in education and advocacy programs. PDF has been awarded a four-star rating from Charity Navigator[2] as well as the Wise Giving Alliance of the Better Business Bureau (BBB) Charity Seal of Approval in recognition of the integrity and efficiency of its programs.[3]
PDF focuses on meeting the needs of people living with Parkinson's by incorporating their perspective into its activities, such as the People With Parkinson's Advisory Council, which advises PDF on all projects, as well as the Clinical Research Learning Institute, which trains people with PD to play a part in clinical research.[4]
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Since its founding in 1957, PDF has funded over $90 million worth of scientific research in Parkinson's disease. PDF's research funding program includes four distinct types of grants: Center Grants, the International Research Grants Program (IRGP), Fellowship and Career Development Grants, and PDF's Advancing Parkinson’s Treatments Innovations Grant. PDF recently introduced a new funding mechanism for conferences that address emerging issues in Parkinson's research and treatment.[5]
In FY2012, PDF is providing $5.5 million in funding for Parkinson's research. Highlights include:
• A study at Columbia University investigating the GBA gene as a suspected cause of early-onset Parkinson's [6]
• A study at Cornell Weill Medical Center and Columbia University to develop a new mouse model that expresses the LRRK2 gene, which will allow researchers to test new Parkinson's treatments in the lab [7]
• A study at the University of Alabama Birmingham using Magnetic Resonance Imaging (MRI) to better understand how Parkinson's affects patients' brains [8]
• A study at Columbia University identifying a novel molecular pathway for Parkinson's involving polyamines that may lead to tests for early detection of the disease and drugs to slow its progression [9]
• A study at Johns Hopkins University indicating that over-activation of a protein called c-Abl shuts down the protective activity of the protein parkin, thus enabling Parkinson's Disease to progress [10]
• A study led by a researcher from UCLA that led to recommendations on identifying which Parkinson's patients are most likely to benefit from Deep Brain Stimulation [11]
• A cohort study conducted at Emory University that confirms a high level of Vitamin D insufficiency in new-onset Parkinson's patients, and suggests that it may play a role in the disease's pathogenesis [12]
• A study led by a researcher from the University of British Columbia that found a mutation in the gene VPS35 causes late-onset Parkinson's Disease[13]
• An ongoing study at Massachusetts General Hospital exploring how stem cells may be used to treat Parkinson's Disease[14]
PDF currently has a number of initiatives to increase participation in and efficacy of Parkinson's clinical research. Clinical trials are necessary to test new discoveries in treatment and cure research before they become available to the public. However, less than one percent of people with Parkinson's participate in trials, according to estimates.[15]
PDtrials is a collaborative initiative of Parkinson’s organizations, led by PDF. Its goal is to increase education and awareness about Parkinson's clinical research. PDF offers information to help people with Parkinson's learn more about participating in clinical studies through its website, www.pdtrials.org. The PDtrials website also allows people with Parkinson's to search for clinical trials throughout the U.S. currently seeking participants. Through the service, people can search for specific Parkinson’s clinical trials using criteria such as location, trial type, and symptom.
The PDF Clinical Research Learning Institute is an annual training for people with Parkinson's. Its goal is to prepare them to serve as advocates within the clinical research process. Through educational sessions led by clinical researchers and other members of the Parkinson's research community, the Learning Institute aims to increase knowledge of clinical research within the Parkinson's community. Members of the community also add their perspective to the clinical research process through their interaction with researchers. The Learning Institute also trains participants to serve as formal representatives on clinical research review and advisory boards.[16]
PDF offers a number of resources to educate people with Parkinson's Disease about participating in clinical research. Specific materials include fact sheets, details on how to become a research advocate, and information about donating organs for research.[17] The PDF website also features an interactive quiz that allows people with Parkinson's to test their knowledge about clinical research.[18]
In addition to funding research to cure Parkinson's, PDF also has several programs dedicated to providing education and support to people with Parkinson’s, their families, caregivers, and healthcare professionals.
Through PDF's Parkinson's Information Service, a team of information specialists provides information and education to people with Parkinson's and their families.[19] PINS comprises two programs where people can submit their questions.
The National HelpLine is a toll free number staffed by a team of information specialists who can answer questions about Parkinson's disease and offer local support and resources. People who wish to access the HelpLine may call 1-800-457-6676.
Ask the Expert is an online resource offered by PDF, featuring information specialists who answer questions about Parkinson's disease. The service is available at www.pdf.org/en.pins_question.
PDF offers newsletters, brochures, booklets, videos, fact sheets, resource lists, and online educational programs to help answer questions about Parkinson's disease symptoms, medications, medical care, exercise, nutrition, and other issues. PDF also offers a free introductory packet for people newly diagnosed with Parkinson’s, containing a number of educational materials.
PDF also offers several online educational programs offering access to the leaders in Parkinson's care and research. Some of the educational materials offered by PDF are specifically geared toward medical professionals, including nurses, speech therapists, physical therapists, nutritionists, and dentists. PDF also offers occasional symposia (both online and in person) for medical professionals that provide continuing medical education credit.
Other educational features of the PDF website include a place for people with Parkinson’s to share their personal stories about living with Parkinson’s, as well as post and search for local Parkinson's-related events and find resources for living with Parkinson’s.
PDF provides a series of interactive online seminars, known as PD ExpertBriefings, available free of charge to Parkinson's patients, their loved ones, and healthcare providers. PD ExpertBriefings are available to view at any time on the PDF website, and many topics are selected by the Parkinson's community. Examples of topics include anxiety, depression, and side effects of Parkinson's medications. [20]
The Creativity and Parkinson’s Project is a special section of the PDF website which exists to explore, support and encourage the therapeutic value of creativity in Parkinson’s. It includes an online gallery where visitors can browse artwork — including paintings, drawings, photographs, poetry and sculpture — created by more than 240 people with Parkinson's disease. The Project also produces an annual wall calendar featuring artwork by 13 of these artists.[21]
PDF is also coordinating the Parkinson's Quilt Project to raise global awareness about Parkinson's disease. The quilt consists of panels submitted by people throughout the world who are affected by Parkinson's, and was displayed at the 2nd World Parkinson Congress in Glasgow, Scotland in September 2010. The quilt is now available for rent to raise awareness about Parkinson's at local community events.[22]
PDF has a number of initiatives in which it collaborates with people with Parkinson's to advocate on their behalf. PDF drives some of these initiatives on its own, and also partners with different organizations on others.
In spring 2006, PDF launched the People With Parkinson's Advisory Council (PPAC). The PPAC gives people with Parkinson's disease a voice in setting PDF's objectives and strategic direction. Its members play an advisory role in setting the foundation's research, education, and public advocacy agenda, and ensure that the patient perspective is represented within PDF.[23]
PDF works with a number of other organizations and entities to represent the needs of the Parkinson's disease community. Its successful collaborations include:
• Providing support to the Parkinson’s Action Network (PAN) to advocate for people with Parkinson's and their families.[24]
• Working to bring better treatments and therapies to market more quickly by increasing awareness and participation in clinical trials as part of the Advancing Parkinson's Therapies initiative.[25]
• Creating an independent nonprofit organization, the World Parkinson Congress Inc., which staged the first-ever World Parkinson Congress in Washington, DC, in 2006. More than 3.000 participants from 60 countries participated in the event.[26] The 2nd World Parkinson Congress was held in Glasgow, Scotland from September 28 through October 1, 2010.
To help people with Parkinson's stay current on important topics, PDF offers a quarterly newsletter, News & Review, which it distributes free of charge to over 100,000 readers. The newsletter includes scientific updates, practical information from health professionals, insight from people with Parkinson's, and other news affecting the Parkinson's community. The newsletter is available at www.pdf.org/pdf_newsletter.
PDF also maintains the Parkinson's Insights blog. The blog offers another perspective on news from the scientific community, pharmaceutical industry, and government that affects the Parkinson's community. It also provides an in-depth discussion of PDF's research strategy, an analysis of new treatments and research, and details about PDF's fundraising campaigns. Contributors to the blog include PDF's Executive Director, Robin Elliott, PDF's Director of Research Programs, Dr. James Beck, and PDF's Director of Development, Eddie Pelto.[27]
PDF relies on the help of its donors to support its work to find the causes of and a cure for Parkinson's disease. In FY2010, 59 percent of PDF’s budget was dedicated to research; 17 percent was used to provide educational materials, information, and services to the Parkinson's community; and five percent was dedicated to advocacy. Nineteen percent of its total budget goes toward management and fundraising.[28]
In addition to accepting individual donations, PDF also holds fundraising events to support its mission. These include an annual gala event in New York City and a Celebrate Spring! event that gathers hundreds of young New Yorkers for cocktails and dancing. All proceeds from the evening are directed toward Parkinson’s research.[29] Many people either living with Parkinson’s themselves or who have loved ones living with Parkinson’s have created their own fundraising events, called PDF Champions, and donated the proceeds to the organization. Through its 30 in 30 Parkinson's Awareness Month Event Challenge, PDF encourages its supporters to host their own events during the month of April, which is Parkinson's Awareness Month. PDF also offers a Parkinson's Disease Awareness Month Toolkit to aid supporters that wish to spread awareness and support research.
PDF’s main office is located at 1359 Broadway, Suite 1509, New York, NY 10018. It also has a Midwest office, located at 833 West Washington Blvd., Chicago, IL 60607. PDF can be contacted via telephone at (800) 457-6676.