Parkinson's Disease Foundation

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Parkinson's Disease Foundation
PDF logo.gif
Founded 1957
Founder(s) William Black
Headquarters
Key people

Robin Elliott, President

Howard D. Morgan, Chair
Area served United States
Focus(es) "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 $100 million worth of scientific research in Parkinson's disease, as well as over $42 million in education and advocacy programs.[1] PDF has been awarded a four-star rating from Charity Navigator in 10 of 14 assessment years,[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 Parkinson's Advocates in Research program, which prepares people with Parkinson's disease to play a direct role in shaping the clinical research process.[4]

Research funding[edit]

Since its founding in 1957, PDF has funded over $100 million worth of scientific research in Parkinson's disease.

Research initiatives[edit]

PDF's research funding program includes four distinct categories: Center Grants, the International Research Grants Program (IRGP), Fellowship and Career Development Grants, and Collaborative Endeavors, which includes PDF's Advancing Parkinson’s Treatments Innovations Grant.

PDF's different types of grants allow it to pursue multiple strategies for funding research that aims to improve the lives and futures of people with Parkinson's Disease. PDF’s specific funding strategies include:

• Fellowship and Career Development Grants, which encourage scientists to pursue research focused on Parkinson's Disease, which they may not have done without support from PDF. An example is Dr. Christopher W. Hess, who began his research career with a PDF-funded fellowship at Columbia University Medical Center and is now moving on to continue his research with the movement disorders department at the University of Florida.[5]

• PDF's Summer Fellowship program, which seeks to cultivate interest in Parkinson's research among advanced undergraduate and graduate students by funding summer research programs up to 10 weeks in length. Recent awards have been granted to student teams seeking better Parkinson's treatments at the University of Alabama Birmingham[6] and the University of Pennsylvania.[7]

• International Research Grants, which provide researchers with creative ideas funding for their Parkinson's disease studies. An example is Dr. Gammon M. Earhart, whose PDF-funded study showed that people with Parkinson's disease who took Tango classes showed improvements in movement and balance.[8]

• PAIR Leadership Awards, a program launched in 2014 to support partnerships between researchers and patient advocates working together to advance Parkinson’s research.[9] Awards include a partnership to improve participant retention in Parkinson’s and Huntington’s disease clinical studies and another that focuses on tele-neurological assessments of patients with Parkinson's disease.[10]

Community Choice Research Award[edit]

In September 2013, PDF launched the first PDF Community Choice Research Award, a new initiative that allows the Parkinson's disease community to choose a priority in which to fund a research project. Through the award, PDF provided funding from a pool of $30,000 to research teams to seek answers to specific scientific questions posed by members of the Parkinson's community.[11] Community members were invited to submit their research priorities online or in person at the World Parkinson Congress in the fall of 2013.[12]

PDF announced in 2014 that the first Community Choice grant would focus on fatigue and gastrointestinal dysfunction, two under-researched symptoms of PD identified by the community as priorities.[13] Results and recommendations from initial investigator-led meetings in these areas are expected in late 2014.[14]

Funding criteria and decisions[edit]

PDF uses two criteria in determining which research it funds: the quality of the science and its potential impact toward understanding and curing Parkinson's Disease. PDF's research funding decisions are made with input from both scientific experts as well as people personally touched by Parkinson's Disease.[15]

From time to time, PDF will also seek to fund specific areas of research. For example, it has issued requests for applications in areas such as clinical genetics.[16]

In 2013, PDF announced that it had provided $1 million in funding for 14 investor initiated projects, representing twenty percent of PDF's total research funding for the year. PDF emphasized the fact that these projects allowed researchers the freedom to test their most daring ideas.[17]

Current research and highlights[edit]

In FY2013, PDF is providing $5.3 million in funding for Parkinson's research through more than 40 different scientific projects and programs.[18] Highlights include:

• A study led by a researcher from Massachusetts General Hospital using human nerve cells to show that a compound called NAB2 successfully reverses the toxic effects of alpha-synuclein, a protein that accumulates in brain cells and leads to Parkinson's disease.[19]

• Research studying brains of deceased patients with Parkinson's disease that provides the most accurate estimate to date of the pace at which people with PD lose dopamine-producing neurons during different stages of the disease.[20]

• An observational study of Parkinson's disease patients with freezing of gait (FOG) that indicated different tests are needed to detect balance deficits, which could ultimately lead to better targeted physical therapy for these patients.[21]

• A study conducted in mice and fruit flies at Tel Aviv University showing that the common natural sweetener mannitol may have the potential to treat Parkinson's disease due to its ability to prevent alpha-synuclein clumping. Depending on the outcome of further animal studies, mannitol may eventually be tested in human clinical trials involving people with PD.[22]

• A study in monkeys at the University of Wisconsin, Madison, that used induced pluripotent stem cells (IPSCs) to create neuron-like cells that were successfully transplanted into the primates' brains. According to the investigators, the success of this study is a step toward future research to develop personalized cell therapy for Parkinson's disease.[23]

• An outpatient study conducted by researchers at the University of Utah and Boston University that found that the biggest barriers to exercise for people with Parkinson's disease include low expectations of the benefits, lack of time, and fear of falling. Based on these results, the investigators propose increased education about the benefits of exercise for people with Parkinson's.[24]

• A study led by an investigator at Johns Hopkins Medicine that revealed that patients with Parkinson's disease can benefit from "virtual" office visits with their healthcare providers in certain situations, potentially saving travel time and money [25]

Clinical research advancement[edit]

PDF 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. Along with funding, however, finding appropriate candidates for participation is a primary obstacle to the advancement of clinical research.[26] Fewer than one percent of people with Parkinson's participate in trials, according to estimates.[27]

PDtrials[edit]

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. Formerly, PDtrials offered information to help people with Parkinson's learn more about participating in clinical studies and a search mechanism to find specific trials through its website, www.pdtrials.org. Though the website closed in July 2012, the PDtrials coalition continues to encourage patients to learn more about getting involved in Parkinson's disease research through a number of resources, including ClinicalTrials.gov, the Fox Trial Finder, NIH Clinical Research Trials and You, and PDF's Parkinson's Advocates in Research initiative.[28]

Parkinson's Advocates in Research[edit]

The Parkinson's Advocates in Research (PAIR) program is PDF’s patient-based initiative to ensure that people with Parkinson’s disease have an impact on the clinical research process. Its goal is to ensure the field of Parkinson’s disease clinical research includes a patient perspective, and ultimately improve outcomes by helping researchers overcome and identify barriers in research designed to bring about new therapies for Parkinson’s disease.[29]

Advocates in the PAIR program help shape clinical trials by serving as patient representatives on clinical research advisory boards. Some serve on committees of governmental agencies, such as the United States Food and Drug Administration (FDA), which influence public policy that impacts Parkinson's disease clinical research.[30] They also help educate the community on the importance of clinical research and encourage participation through talks and community support groups.[31] PAIR advocates also serve as spokespeople for the Parkinson's disease community in local and national media.[32] Throughout the month of April, which is Parkinson's Awareness Month, advocates in the PAIR program lead a series of "PAIR Up for Parkinson's Research" educational forums in communities throughout the U.S.[33]

In June 2012, PDF extended the PAIR program to the Web with the launch of a free online component. The four part online course, led by PDF's director of research programs and scientists from a number of prominent institutions, makes key components of in-person PAIR trainings accessible to additional members of the Parkinson's community.[34]

PAIR advocates played a number of prominent roles in the 3rd World Parkinson Congress held in Montreal, Quebec, Canada, in October 2013. In addition to serving as reporters and writing entries for PDF's blog, PAIR advocates led sessions on such topics as service dogs and Parkinson's[35] and delivered presentations on topics such as patients' perspectives in clinical trials[36] and the role of patients in research.[37]

PDF Learning Institute[edit]

The PDF Learning Institute is an annual training for advocates in the PAIR program. 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.[38]

Influencing policy[edit]

PDF uses its leadership and influence within the Parkinson's disease community to comment on and influence government policy that may impact people with Parkinson's and Parkinson's research. For example, upon the announcement of President Barack Obama's BRAIN Initiative to map the human brain, PDF released a statement in which the organization's president, Robin Elliott, praised the initiative and urged the President to include patient advocates directly affected by diseases that impact the brain such as Parkinson's in determining how to move forward with the project.[39] In a blog entry, Elliott further stressed the importance of including patient advocates in shaping clinical research for Parkinson's disease.[40]

Clinical research education[edit]

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.[41] The PDF website also features an interactive quiz that allows people with Parkinson's to test their knowledge about clinical research.[42]

Education and support[edit]

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[edit]

Through PDF's Parkinson's Information Service (PINS), a team of information specialists provides information and education to people with Parkinson's and their families.[43] 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[edit]

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.[44]

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[edit]

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.[45] As of September 2012, health professionals who participate in PD ExpertBriefings can earn continuing education credits through PDF's partnership with the American Society on Aging.[46]

PD ExpertBriefings are part of PDF's Online Seminar program, and are sponsored by educational grants from AbbVie, Inc., and Teva Neuroscience.[47]

Creativity and Parkinson's Project[edit]

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.[48] It includes an online gallery where visitors can browse artwork — including paintings, drawings, photographs, poetry and sculpture — created by nearly 300 people with Parkinson's disease. The Project also produces an annual wall calendar distributed to nearly 20,000 people featuring artwork by 13 of these artists.[49] Participants in the project may also donate their works to support PDF.[50]

Parkinson's Quilt Project[edit]

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. During the past year, more than 600 people created quilt panels.[51] The quilt is now available for rent to raise awareness about Parkinson's at local community events.[52]

Advocacy[edit]

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[edit]

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.[53]

Collaborations[edit]

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.[54]

• Supporting a consortium of regional Parkinson's Disease organizations throughout the U.S. called the Alliance of Independent Regional Parkinson Organizations (AIRPO). PDF provides administrative support and guidance to foster better collaboration among these organizations that work on behalf of people with Parkinson's disease. Initial members of AIRPO include: the Houston Area Parkinson Society, Michigan Parkinson Foundation, Northwest Parkinson’s Foundation, Parkinson Association of the Carolinas, and Parkinson Association of the Rockies.[55]

• 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.[56]

• Taking on leadership roles in collaborative efforts to advance clinical research, such as the Clinical Trials Transformation Initiative's (CTTI) Patient Leadership Council, which brings together leaders from advocacy groups and voluntary health agencies to develop solutions to common obstacles for clinical trials, such as patient recruitment and retention.[57]

• Co-hosting symposia along with other Parkinson's organizations to explore topics that may result in enhanced treatment for people with Parkinson's disease, such as telemedicine.[58]

• Funding and presenting web seminars with the American Society on Aging that provide continuing education credits to healthcare providers and educate them on treating older adults with Parkinson's.[59]

World Parkinson Congress[edit]

PDF created 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.[60] The 2nd World Parkinson Congress was held in Glasgow, Scotland from September 28 through October 1, 2010.

PDF had a large presence 3rd World Parkinson Congress, held in Montreal, Quebec, Canada in October 2013 and attended by more than 3,300 delegates from 70 countries.[61] PDF's presence included more than 50 delegates, a course discussing patient engagement in Parkinson's research, an exhibit, a display of the Parkinson's Quilt, and a number of PDF-led posters and sessions.[62] In addition, members of PDF's People with Parkinson’s Advisory Council (PPAC) and PDF Research Advocates served as reporters and contributed numerous entries to PDF's blog during the conference.[63]

Parkinson's information and news[edit]

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 Perspectives on Parkinson's 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 president, Robin Elliott, PDF's director of research programs, Dr. James Beck, and PDF's director of development, Eddie Pelto.[64]

Fundraising activities[edit]

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 FY2011, 60 percent of PDF’s budget was dedicated to research; 15 percent was used to provide educational materials, information, and services to the Parkinson's community; and five percent was dedicated to advocacy. Twenty percent of its total budget goes toward management and fundraising.[3] PDF has received top ratings from charity watchdog organizations for its efficiency.[65]

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, which has raised $600,000 since inception, are directed toward Parkinson’s research.[66]

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. These events may include activities involving college communities[67] and participating in notable running or endurance events such as the Rock 'n' Roll Brooklyn 10K[68] and the Marine Corps Marathon 10k in Washington, DC.[69] A number of fundraisers include people with Parkinson's disease who complete difficult challenges, such as hiking across the Grand Canyon, despite living with PD.[70] PDF also encourages supporters to organize "Helping Hours," or social events in which attendees enjoy a night out and also raise funds.[71] Examples include a “Tequila & Tapas” event organized by an individual with a direct family connection to Parkinson's disease.[72]

Through its Parkinson's Awareness Month activities, PDF holds various fundraising, support, and awareness activities 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, which is often accomplished by coordinating education events in local communities.[73]

Partnerships[edit]

PDF has partnerships with several businesses and organizations that provide direct financial support or assist with PDF's fundraising and awareness efforts. For instance, Chock full o'Nuts coffee company sponsors several national promotions that raise awareness and funds for PDF, including contributing a percentage of proceeds over a defined time period and placing wording on product packaging.[74] The Light of Day Foundation also partners with PDF on fundraising initiatives such as the 2014 PD Awareness Month Matching Gift Challenge, in which the Light of Day Foundation matched all donations to PDF up to $100,000 during April 2014.[75]

PDF also collaborates with prominent individuals with a connection to Parkinson's disease. An example is PDF's partnership with basketball player Ivory Latta, a point guard on the WNBA's Washington Mystics whose father and paternal grandmother both live with Parkinson's disease. As an Ambassador for the PDF Champions program, Latta is involved with fundraising campaigns and generating awareness for PDF, and enlists other professional athletes to support the cause.[76] PDF also works together with high-profile organizations to generate awareness about the Foundation and its efforts. For example, the NFL's New Orleans Saints recognized PDF as a community partner in an on-field ceremony during a game in September 2012.[77]

Founding and leadership[edit]

PDF was founded in 1957 by William Black, president of Chock full o'Nuts coffee company, after one of his company's employees was diagnosed with Parkinson's disease. Black launched the organization with a $250,000 grant to support Parkinson's disease research.[78] His widow, Page Morton Black served as PDF’s chairman emeritus until her passing in July 2013.[79][80]

PDF’s current leadership comprises a volunteer board of directors and a professional staff. The board of directors includes members of both the medical and lay communities.[81] Howard Morgan, co-president of the private equity firm Castle Harlan, serves as chair, and Constance Woodruff Atwell, a former director at the U.S. National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS), serves as vice chair.[82] Other board members include Richard D. Field, co-founder of the online lending marketplace LendingTree, LLC.[83]

On the staff side, Robin Elliott, a career professional in development, communications and nonprofit management, serves as PDF’s president.[84] Elliott served as executive director from October 1996 until June 2013, when he was named the organization’s president.[79]

Location[edit]

PDF’s main office is located at 1359 Broadway, Suite 1509, New York, NY 10018. PDF can be contacted via telephone at (800) 457-6676.

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