Parkinson's Disease Foundation
Encyclopedia
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
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.
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.
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
• 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
• A study at the University of Alabama Birmingham using Magnetic Resonance Imaging (MRI)
to better understand how Parkinson's affects patients' brains
• 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
• 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
• 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
• 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
• 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
• An ongoing study at Massachusetts General Hospital
exploring how stem cells may be used to treat Parkinson's Disease
. 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.
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.
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.
, a team of information specialists provides information and education to people with Parkinson's and their families. 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 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.
(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.
• Providing support to the Parkinson’s Action Network (PAN) to advocate for people with Parkinson's and their families.
• 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.
• 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. The 2nd World Parkinson Congress was held in Glasgow, Scotland from September 28 through October 1, 2010.
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.
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.
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. 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.
Parkinson's disease
Parkinson's disease is a degenerative disorder of the central nervous system...
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
Charity Navigator
Charity Navigator is an independent, non-profit organization that evaluates American charities. Its stated goal is "to advance a more efficient and responsive philanthropic marketplace by evaluating the financial health of America's largest charities."-About:...
as well as the Wise Giving Alliance of the Better Business Bureau
BBB Wise Giving Alliance
The BBB Wise Giving Alliance is an association of charities formed by a merger of the National Charities Information Bureau and the Council of Better Business Bureaus' Foundation and its Philanthropic Advisory Service . It publishes a set of standards of accountability for charitable...
(BBB) Charity Seal of Approval in recognition of the integrity and efficiency of its programs.
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
People With Parkinson's Advisory Council
The People With Parkinson's Advisory Council is a committee of people with Parkinson's Disease created to provide the patient perspective to the Parkinson's Disease Foundation in developing programs and setting priorities....
, which advises PDF on all projects, as well as the Clinical Research Learning Institute
Clinical Research Learning Institute
The Clinical Research Learning Institute is an initiative of the Parkinson's Disease Foundation designed to prepare people with Parkinson's disease to serve as advocates within the clinical research process...
, which trains people with PD to play a part in clinical research.
Research Funding
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.In FY2012, PDF is providing $5.5 million in funding for Parkinson's research. Highlights include:
• A study at Columbia University
Columbia University
Columbia University in the City of New York is a private, Ivy League university in Manhattan, New York City. Columbia is the oldest institution of higher learning in the state of New York, the fifth oldest in the United States, and one of the country's nine Colonial Colleges founded before the...
investigating the GBA
Glucocerebrosidase
β-Glucocerebrosidase is an enzyme with glucosylceramidase activity that is needed to cleave, by hydrolysis, the beta-glucosidic linkage of the chemical glucocerebroside, an intermediate in glycolipid metabolism...
gene as a suspected cause of early-onset Parkinson's
• A study at Cornell Weill Medical Center and Columbia University to develop a new mouse model that expresses the LRRK2
LRRK2
Leucine-rich repeat kinase 2 , also known as dardarin, is an enzyme that in humans is encoded by the LRRK2 gene. LRRK2 is a member of the leucine-rich repeat kinase family...
gene, which will allow researchers to test new Parkinson's treatments in the lab
• A study at the University of Alabama Birmingham using Magnetic Resonance Imaging (MRI)
Magnetic resonance imaging
Magnetic resonance imaging , nuclear magnetic resonance imaging , or magnetic resonance tomography is a medical imaging technique used in radiology to visualize detailed internal structures...
to better understand how Parkinson's affects patients' brains
• 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
• A study at Johns Hopkins University
Johns Hopkins University
The Johns Hopkins University, commonly referred to as Johns Hopkins, JHU, or simply Hopkins, is a private research university based in Baltimore, Maryland, United States...
indicating that over-activation of a protein called c-Abl shuts down the protective activity of the protein parkin
Parkin
Parkin may refer to:* Parkin , an enzyme* Parkin , a type of cake* Parkin, Arkansas, a US city* Parkin , people with the surname Parkin* Parkin Archeological State Park also known as Parkin Site...
, thus enabling Parkinson's Disease to progress
• 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
Deep brain stimulation
Deep brain stimulation is a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain...
• A cohort study conducted at Emory University
Emory University
Emory University is a private research university in metropolitan Atlanta, located in the Druid Hills section of unincorporated DeKalb County, Georgia, United States. The university was founded as Emory College in 1836 in Oxford, Georgia by a small group of Methodists and was named in honor of...
that confirms a high level of Vitamin D
Vitamin D
Vitamin D is a group of fat-soluble secosteroids. In humans, vitamin D is unique both because it functions as a prohormone and because the body can synthesize it when sun exposure is adequate ....
insufficiency in new-onset Parkinson's patients, and suggests that it may play a role in the disease's pathogenesis
• A study led by a researcher from the University of British Columbia
University of British Columbia
The University of British Columbia is a public research university. UBC’s two main campuses are situated in Vancouver and in Kelowna in the Okanagan Valley...
that found a mutation in the gene VPS35
VPS35
Vacuolar protein sorting-associated protein 35 is a protein that in humans is encoded by the VPS35 gene.This gene belongs to a group of vacuolar protein sorting genes. The encoded protein is a component of a large multimeric complex, termed the retromer complex, involved in retrograde transport of...
causes late-onset Parkinson's Disease
• An ongoing study at Massachusetts General Hospital
Massachusetts General Hospital
Massachusetts General Hospital is a teaching hospital and biomedical research facility in the West End neighborhood of Boston, Massachusetts...
exploring how stem cells may be used to treat Parkinson's Disease
Clinical Research Advancement
PDF currently has a number of initiatives to increase participation in and efficacy of Parkinson's clinical researchParkinson's disease clinical research
Parkinson's disease Clinical Research is any study intended to help answer questions about new treatments by studying their effects on human subjects...
. 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.
PDtrials
PDtrialsPDtrials
PDtrials is an initiative to increase education and awareness about Parkinson's disease clinical research. The initiative is led by the Parkinson's Disease Foundation, and involves a collaboration between a number of Parkinson's organizations in the U.S...
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.
Clinical Research Learning Institute
The PDF Clinical Research Learning InstituteClinical Research Learning Institute
The Clinical Research Learning Institute is an initiative of the Parkinson's Disease Foundation designed to prepare people with Parkinson's disease to serve as advocates within the clinical research process...
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.
Clinical Research Education
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. The PDF website also features an interactive quiz that allows people with Parkinson's to test their knowledge about clinical research.Education and Support
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.Parkinson’s Information Service (PINS)
Through PDF's Parkinson's Information ServiceParkinson's Information Service
The Parkinson’s Information Service is a service that provides people with Parkinson's disease and their families access to a team of information specialists who offer practical information and resources...
, a team of information specialists provides information and education to people with Parkinson's and their families. 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.
Educational Materials
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.
PD ExpertBriefings
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.Creativity and Parkinson's Project
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.Parkinson's Quilt Project
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.Advocacy
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.People with Parkinson's Advisory Council
In spring 2006, PDF launched the People With Parkinson's Advisory CouncilPeople With Parkinson's Advisory Council
The People With Parkinson's Advisory Council is a committee of people with Parkinson's Disease created to provide the patient perspective to the Parkinson's Disease Foundation in developing programs and setting priorities....
(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.
Collaborations
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.
• 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.
• Creating an independent nonprofit organization, the World Parkinson Congress
World Parkinson Congress
The World Parkinson Congress, often referred to as the WPC, is a non-religious, non-political, and non-profit making organisation concerned with the health and welfare of people living with Parkinson's disease and their families and caregivers...
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. The 2nd World Parkinson Congress was held in Glasgow, Scotland from September 28 through October 1, 2010.
Parkinson's Information and News
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.
Fundraising Activities
PDF relies on the help of its donors to support its work to find the causes of and a cure for Parkinson's disease. InFY2010, 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.
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. 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.