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Research updates including funding, new grants awarded, and conference outcomes
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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:
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]].<ref>{{cite web |title=A Soldier on the Frontlines of Research |url=http://www.pdf.org/en/parkinsontulip_december2012_hess |publisher=Parkinson's Disease Foundation |accessdate=19 January 2013}}</ref>
* 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]].<ref>{{cite web |title=A Soldier on the Frontlines of Research |url=http://www.pdf.org/en/parkinsontulip_december2012_hess |publisher=Parkinson's Disease Foundation |accessdate=19 January 2013}}</ref>
* The Stanley Fahn Junior Faculty Award, through which PDF aims to ensure that young scientists who begin to pursue Parkinson's disease research stay in the field and avoid the funding "valley of death" that can occur during the transition from mentored to independent research. The award, which will launch in 2016, provides junior investigators with up to $300,000 in funding over the course of three years to pursue independent PD research.<ref>{{cite web|last1=Ferreira|first1=Leonor Mateus|title=Applications Open For Parkinson’s Disease Foundation’s Research Grants|url=http://parkinsonsnewstoday.com/2015/10/12/applications-open-parkinsons-disease-foundations-research-grants/|website=Parkinson's News Today|accessdate=3 November 2015}}</ref>
* The Stanley Fahn Junior Faculty Award, through which PDF aims to ensure that young scientists who begin to pursue Parkinson's disease research stay in the field and avoid the funding "valley of death" that can occur during the transition from mentored to independent research. The award, which launched 2016, provides junior investigators with up to $300,000 in funding over the course of three years to pursue independent PD research.<ref>{{cite web|last1=Ferreira|first1=Leonor Mateus|title=Applications Open For Parkinson’s Disease Foundation’s Research Grants|url=http://parkinsonsnewstoday.com/2015/10/12/applications-open-parkinsons-disease-foundations-research-grants/|website=Parkinson's News Today|accessdate=3 November 2015}}</ref> The first two awards were granted to an investigator from [[Massachusetts Institute of Technology]] studying [[dopamine]]-dependent circuits activity and an investigator from [[Oregon Health & Science University]] studying aggregates in the living mouse brain.<ref>{{cite web|title=Research We Fund|url=http://www.pdf.org/en/results_funded|website=Parkinson's Disease Foundation|accessdate=24 April 2016}}</ref>
* 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. An example of this program is a recent award granted to a student researcher who was part of a team at [[Georgetown University]] who found how [[α-synuclein]], a protein that accumulates in Parkinson's disease, activates the brain's immune response.<ref>{{cite journal |last1=Daniele |first1=SG |title=Activation of MyD88-dependent TLR1/2 signaling by misfolded α-synuclein, a protein linked to neurodegenerative disorders |journal=Science Signaling |date=12 May 2015 |volume=8 |issue=376 |doi=10.1126/scisignal.2005965 |url=http://stke.sciencemag.org/content/8/376/ra45 |accessdate=22 July 2015}}</ref>
* 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. An example of this program is a recent award granted to a student researcher who was part of a team at [[Georgetown University]] who found how [[α-synuclein]], a protein that accumulates in Parkinson's disease, activates the brain's immune response.<ref>{{cite journal |last1=Daniele |first1=SG |title=Activation of MyD88-dependent TLR1/2 signaling by misfolded α-synuclein, a protein linked to neurodegenerative disorders |journal=Science Signaling |date=12 May 2015 |volume=8 |issue=376 |doi=10.1126/scisignal.2005965 |url=http://stke.sciencemag.org/content/8/376/ra45 |accessdate=22 July 2015}}</ref>
* 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 [[Argentine tango|Tango]] classes showed improvements in movement and balance.<ref>{{cite web|title=Shall We Dance?|url=http://www.pdf.org/en/parkinsontulip_december2012_earhart|publisher=Parkinson's Disease Foundation|accessdate=19 January 2013}}</ref>
* 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 [[Argentine tango|Tango]] classes showed improvements in movement and balance.<ref>{{cite web|title=Shall We Dance?|url=http://www.pdf.org/en/parkinsontulip_december2012_earhart|publisher=Parkinson's Disease Foundation|accessdate=19 January 2013}}</ref>
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PDF announced in 2014 that the first Community Choice grant would focus on [[Fatigue (medical)|fatigue]] and [[gastrointestinal dysfunction]], two under-researched symptoms of PD identified by the community as priorities.<ref>{{cite web|title=Parkinson's Disease Foundation® Offers $30,000 Grant to Study Fatigue and Gastrointestinal Dysfunction|url=http://www.gastro.org/journals-publications/aga-edigest/archive/aga_edigest_march_20_2014|work=AGA eDigest|publisher=American Gastroenterological Association|accessdate=8 April 2014}}</ref> PDF held two conferences in fall 2014, bringing together scientists and patient advocates to address these two topics chosen by the community.<ref>{{cite web|title=PDF Addresses Unmet Needs at Fall Conferences|url=http://www.pdf.org/winter15_pdf_events|website=Parkinson's Disease Foundation|accessdate=6 January 2015}}</ref>
PDF announced in 2014 that the first Community Choice grant would focus on [[Fatigue (medical)|fatigue]] and [[gastrointestinal dysfunction]], two under-researched symptoms of PD identified by the community as priorities.<ref>{{cite web|title=Parkinson's Disease Foundation® Offers $30,000 Grant to Study Fatigue and Gastrointestinal Dysfunction|url=http://www.gastro.org/journals-publications/aga-edigest/archive/aga_edigest_march_20_2014|work=AGA eDigest|publisher=American Gastroenterological Association|accessdate=8 April 2014}}</ref> PDF held two conferences in fall 2014, bringing together scientists and patient advocates to address these two topics chosen by the community.<ref>{{cite web|title=PDF Addresses Unmet Needs at Fall Conferences|url=http://www.pdf.org/winter15_pdf_events|website=Parkinson's Disease Foundation|accessdate=6 January 2015}}</ref>


The conference on gastrointestinal dysfunction featured experts in the field of [[movement disorders]] and [[gastroenterology]] interacting extensively with PD patients, exemplifying PDF's commitment to patient engagement. The conference resulted in an action plan of items to address and solve [[constipation]] in people with Parkinson's disease, including small pilot clinical trials.<ref>{{cite web|last1=Cook|first1=Diane|title=Making GI a Priority for Parkinson’s Research|url=http://blog.pdf.org/2014/10/16/gi-and-pd-a-priority-for-research/|website=Parkinson's Disease Foundation|accessdate=6 January 2015}}</ref> The conference on fatigue also featured medical experts and advocates.<ref>{{cite news|last1=Marlowe|first1=Bettie|title=Anne and Jim Newbould: Enjoying life while living with Parkinson's disease|url=http://www.clevelandbanner.com/view/full_story/26137609/article-Anne-and-Jim-Newbould--Enjoying-life-while-living-with-Parkinson-s-disease|accessdate=6 January 2015|agency=Cleveland Daily Banner|date=23 November 2014}}</ref> PDF has discussed initial findings from the conference and follow-up study plans in its blog, and has submitted a corresponding paper to a journal for publication.<ref>{{cite web|last1=Friedman|first1=Joseph F.|title=You Asked & We’re Answering: Fatigue in PD|url=http://blog.pdf.org/2015/08/12/you-asked-were-answering-fatigue-in-pd/|website=Perspectives on Parkinson's|publisher=Parkinson's Disease Foundation|accessdate=3 November 2015}}</ref>
The conference on gastrointestinal dysfunction featured experts in the field of [[movement disorders]] and [[gastroenterology]] interacting extensively with PD patients, exemplifying PDF's commitment to patient engagement. The conference resulted in an action plan of items to address and solve [[constipation]] in people with Parkinson's disease, including small pilot clinical trials.<ref>{{cite web|last1=Cook|first1=Diane|title=Making GI a Priority for Parkinson’s Research|url=http://blog.pdf.org/2014/10/16/gi-and-pd-a-priority-for-research/|website=Parkinson's Disease Foundation|accessdate=6 January 2015}}</ref> The conference on fatigue included patients and scientists such as psychiatrists and neurologists who are experts in fatigue in Parkinson's disease as well as other conditions such as [[multiple sclerosis]] and [[cancer]].<ref>{{cite web|title=Progress Toward Understanding Fatigue in Parkinson’s Disease|url=http://www.pdf.org/en/science_news/release/pr_1458845419|website=Parkinson's Disease Foundation|accessdate=24 April 2016}}</ref> Conference outcomes included agreement on a definition of fatigue, a clinical review of fatigue based on existing studies, insights into fatigue from other disorders, measurement requirements for fatigue in PD, and recommendation of future research opportunities including the identification of [[biomarkers]], the use of imaging techniques, and the study of non-drug therapies.<ref>{{cite journal|last1=Friedman|first1=Joseph H.|last2=et. al.|title=Fatigue in Parkinson’s disease: report from a mutidisciplinary symposium|journal=npj Parkinson's Disease|date=14 January 2016|volume=2|doi=10.1038/npjparkd.2015.25|url=http://www.nature.com/articles/npjparkd201525|accessdate=24 April 2016}}</ref>


In April 2015, PDF announced a second round of PDF Community Choice Awards. Through an online survey, PDF asked people with Parkinson's disease and their care partners for their opinions about the most important aspects of Parkinson's disease on which research should focus, including its symptoms, day-to-day management and treatment.<ref>{{cite web|title=Parkinson's Disease Foundation Calls Upon the Community to Shape Research During Parkinson's Awareness Month|url=http://www.prnewswire.com/news-releases/parkinsons-disease-foundation-calls-upon-the-community-to-shape-research-during-parkinsons-awareness-month-300059671.html|website=PR Newswire|accessdate=19 April 2015}}</ref> PDF's Scientific Advisory Board will review the survey responses and once again select two research questions chosen by the PDF community to be investigated with PDF funding.<ref>{{cite news|last1=Thelen|first1=Gil|title=Gil Thelen: Parkinson’s Disease shakes an editor’s hand|url=http://tbo.com/list/news-opinion-commentary/gil-thelen-parkinsons-disease-shakes-an-editors-hand-20150403/|accessdate=19 April 2015|agency=The Tampa Tribune|date=3 April 2015}}</ref>
In April 2015, PDF announced a second round of PDF Community Choice Awards. Through an online survey, PDF asked people with Parkinson's disease and their care partners for their opinions about the most important aspects of Parkinson's disease on which research should focus, including its symptoms, day-to-day management and treatment.<ref>{{cite web|title=Parkinson's Disease Foundation Calls Upon the Community to Shape Research During Parkinson's Awareness Month|url=http://www.prnewswire.com/news-releases/parkinsons-disease-foundation-calls-upon-the-community-to-shape-research-during-parkinsons-awareness-month-300059671.html|website=PR Newswire|accessdate=19 April 2015}}</ref> PDF's Scientific Advisory Board will review the survey responses and once again select two research questions chosen by the PDF community to be investigated with PDF funding.<ref>{{cite news|last1=Thelen|first1=Gil|title=Gil Thelen: Parkinson’s Disease shakes an editor’s hand|url=http://tbo.com/list/news-opinion-commentary/gil-thelen-parkinsons-disease-shakes-an-editors-hand-20150403/|accessdate=19 April 2015|agency=The Tampa Tribune|date=3 April 2015}}</ref>
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In FY2014 and FY2015, PDF invested a total of more than $10 million in Parkinson's disease research through funding 181 research grants scientific projects and programs.<ref name="PDF 2014-15 Biennial Report">{{cite web|title=Progress Impact Passion: PDF Biennial Report 2014-2015|url=http://www.pdf.org/pdf/pubs_biennialreport_2014_2015.pdf|website=Parkinson's Disease Foundation|accessdate=16 January 2016|page=5}}</ref> Highlights include:
In FY2014 and FY2015, PDF invested a total of more than $10 million in Parkinson's disease research through funding 181 research grants scientific projects and programs.<ref name="PDF 2014-15 Biennial Report">{{cite web|title=Progress Impact Passion: PDF Biennial Report 2014-2015|url=http://www.pdf.org/pdf/pubs_biennialreport_2014_2015.pdf|website=Parkinson's Disease Foundation|accessdate=16 January 2016|page=5}}</ref> Highlights include:


* A study at [[Columbia University]] that used a new optical technique to discover that only a small portion of [[synapses]] are active at any given time in the brains of mice.<ref>{{cite journal|last1=Sulzer|first1=David|last2=et. al.|title=Fluorescent false neurotransmitter reveals functionally silent dopamine vesicle clusters in the striatum|journal=Nature Neuroscience|date=22 February 2016|volume=19|pages=578–586|doi=10.1038/nn.4252|url=http://www.nature.com/neuro/journal/v19/n4/full/nn.4252.html|accessdate=24 April 2016}}</ref>
* A study in mice conducted by researchers at the [[Sloan-Kettering Institute for Cancer Research]] using [[optogenetics]] to show how [[neurons]] transplanted into the brain release [[dopamine]] that alleviates Parkinson's disease symptoms.<ref>{{cite journal |last1=Steinbeck |first1=JA |title=Optogenetics enables functional analysis of human embryonic stem cell-derived grafts in a Parkinson's disease model. |journal=Nature Biotechnology |date=February 2015 |volume=33 |issue=2 |pages=204–9 |doi=10.1038/nbt.3124 |url=http://www.nature.com/nbt/journal/v33/n2/full/nbt.3124.html |accessdate=22 July 2015}}</ref>
* A study in mice conducted by researchers at the [[Sloan-Kettering Institute for Cancer Research]] using [[optogenetics]] to show how [[neurons]] transplanted into the brain release [[dopamine]] that alleviates Parkinson's disease symptoms.<ref>{{cite journal |last1=Steinbeck |first1=JA |title=Optogenetics enables functional analysis of human embryonic stem cell-derived grafts in a Parkinson's disease model. |journal=Nature Biotechnology |date=February 2015 |volume=33 |issue=2 |pages=204–9 |doi=10.1038/nbt.3124 |url=http://www.nature.com/nbt/journal/v33/n2/full/nbt.3124.html |accessdate=22 July 2015}}</ref>
* Clinical research conducted by researchers at the [[Cleveland Clinic]] that used [[iPad]] tablets to assess and measure balance difficulties in people with Parkinson's disease.<ref>{{cite journal |last1=Ozinga |first1=Sarah J. |title=Objective assessment of postural stability in Parkinson's disease using mobile technology |journal=Movement Disorders |date=25 March 2015 |doi=10.1002/mds.26214 |url=http://onlinelibrary.wiley.com/doi/10.1002/mds.26214/abstract |accessdate=22 July 2015}}</ref>
* Clinical research conducted by researchers at the [[Cleveland Clinic]] that used [[iPad]] tablets to assess and measure balance difficulties in people with Parkinson's disease.<ref>{{cite journal |last1=Ozinga |first1=Sarah J. |title=Objective assessment of postural stability in Parkinson's disease using mobile technology |journal=Movement Disorders |date=25 March 2015 |doi=10.1002/mds.26214 |url=http://onlinelibrary.wiley.com/doi/10.1002/mds.26214/abstract |accessdate=22 July 2015}}</ref>

Revision as of 20:00, 24 April 2016

Parkinson's Disease Foundation
Founded1957
FounderWilliam Black
Focus"Parkinson's disease research, education and public advocacy"[1]
Location
Area served
United States
Key people
Robin Elliott, President Howard D. Morgan, Chair
Websitewww.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 nearly $110 million worth of scientific research in Parkinson's disease, as well as nearly $47 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

Since its founding in 1957, PDF has funded nearly $110 million worth of scientific research in Parkinson's disease. In 2014, Genetic Engineering & Biotechnology News named PDF number seven in its list of the top 30 grant-giving disease foundations.[5]

Research initiatives

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.[6]
  • The Stanley Fahn Junior Faculty Award, through which PDF aims to ensure that young scientists who begin to pursue Parkinson's disease research stay in the field and avoid the funding "valley of death" that can occur during the transition from mentored to independent research. The award, which launched 2016, provides junior investigators with up to $300,000 in funding over the course of three years to pursue independent PD research.[7] The first two awards were granted to an investigator from Massachusetts Institute of Technology studying dopamine-dependent circuits activity and an investigator from Oregon Health & Science University studying aggregates in the living mouse brain.[8]
  • 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. An example of this program is a recent award granted to a student researcher who was part of a team at Georgetown University who found how α-synuclein, a protein that accumulates in Parkinson's disease, activates the brain's immune response.[9]
  • 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.[10]
  • Advancing Parkinson’s Treatments Grants, which seek to fund translational research that advances new treatments and therapies along the research pipeline toward patient delivery.[11] Under this umbrella, PDF provides several types of research funding, including:
    • PAIR Leadership Awards, a program launched in 2014 to support partnerships between researchers and patient advocates working together to advance Parkinson’s research.[12] 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.[13]
    • Conference Awards, which fund meetings that bring together researchers, patients, and caregivers to address a specific topic of inquiry relating to Parkinson's disease research. An example is the PDF Conference on Palliative Care in PD, which took place in October 2015. At this conference, attendees (including both researchers and PDF advocates living with PD) developed a set of 14 action items to help advance the understanding and implementation of palliative care for people with Parkinson's disease.[14]

Community Choice Research Award

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.[15] Community members were invited to submit their research priorities online or in person at the World Parkinson Congress in the fall of 2013.[16]

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.[17] PDF held two conferences in fall 2014, bringing together scientists and patient advocates to address these two topics chosen by the community.[18]

The conference on gastrointestinal dysfunction featured experts in the field of movement disorders and gastroenterology interacting extensively with PD patients, exemplifying PDF's commitment to patient engagement. The conference resulted in an action plan of items to address and solve constipation in people with Parkinson's disease, including small pilot clinical trials.[19] The conference on fatigue included patients and scientists such as psychiatrists and neurologists who are experts in fatigue in Parkinson's disease as well as other conditions such as multiple sclerosis and cancer.[20] Conference outcomes included agreement on a definition of fatigue, a clinical review of fatigue based on existing studies, insights into fatigue from other disorders, measurement requirements for fatigue in PD, and recommendation of future research opportunities including the identification of biomarkers, the use of imaging techniques, and the study of non-drug therapies.[21]

In April 2015, PDF announced a second round of PDF Community Choice Awards. Through an online survey, PDF asked people with Parkinson's disease and their care partners for their opinions about the most important aspects of Parkinson's disease on which research should focus, including its symptoms, day-to-day management and treatment.[22] PDF's Scientific Advisory Board will review the survey responses and once again select two research questions chosen by the PDF community to be investigated with PDF funding.[23]

Funding criteria and decisions

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.[24] For scientific input, PDF appoints members to a Scientific Advisory Board, whose members are charged with providing strategic direction to PDF's research programs.[25] In March 2015, PDF expanded its Scientific Advisory Board to include 23 members, chosen for the leadership in the care and treatment of Parkinson's disease.[26]

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.[27]

PDF also seeks to support early stage research that paves the way for future studies further down the clinical pipeline. An example is a research grant provided by PDF in 2007 to Dr. Michael Schwarzschild of MassGeneral Institute of Neurodegenerative Disease at Massachusetts General Hospital, that studied urate levels in people with Parkinson's disease.[28] The results of this early research contributed to phase 3 trial called SURE-PD3 (Study of URate Elevation in Parkinson’s Disease, phase 3), set to launch in early 2016 that will investigate whether inosine treatment aimed at elevating urate slows the progression of PD.[29]

In July 2014, PDF announced that it had provided $1.3 million in funding for more than 30 investor initiated projects, representing more than twenty percent of PDF's total research funding for the year. PDF emphasized that these awards fund research aimed at helping people with Parkinson's disease achieve and maintain the best quality of life, while also seeking to better understand the disease and ultimately cure it.[30]

Current research and highlights

In FY2014 and FY2015, PDF invested a total of more than $10 million in Parkinson's disease research through funding 181 research grants scientific projects and programs.[31] Highlights include:

Clinical research advancement

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.[43] Fewer than one percent of people with Parkinson's participate in trials, according to estimates. PDF's website features a question and answer page and other resources with the goal of educating people with PD about options for participating in trials.[44]

Parkinson's Advocates in Research

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.[45]

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.[46] They also help educate the community on the importance of clinical research and encourage participation through talks and community support groups.[47] PAIR advocates also serve as spokespeople for the Parkinson's disease community in local and national media.[48] 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.[49]

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.[50]

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[51] and delivered presentations on topics such as patients' perspectives in clinical trials[52] and the role of patients in research.[53]

PDF Learning Institute

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.[54]

Influencing policy

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.[55] In a blog entry, Elliott further stressed the importance of including patient advocates in shaping clinical research for Parkinson's disease.[56]

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.[57]

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.

National HelpLine

Through PDF's National HelpLine, a team of specialists provides information and education to people with Parkinson's disease and their families. Individuals seeking information may access the National HelpLine through an e-mail address or a toll free number. The information specialists who staff the HelpLine can answer questions about Parkinson's disease and offer local support and resources. While the HelpLine can provide general information about Parkinson's disease and help patients prepare for medical appointments, it does not replace the relationship between physicians and patients.[58]

Examples of the type of information the HelpLine provides include a listing of movement disorder specialists to treat patients exhibiting symptoms of PD or Parkinsonism,[59] as well as tips and information for patients with Parkinson's disease traveling via airplane.[60]

The HelpLine also addresses concerns brought on by news stories involving Parkinson's disease, such as the impact of medications used to treat PD on risk of suicide following the death of actor Robin Williams and the subsequent revelation of his PD diagnosis.[61]

Educational materials and resources

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.[62]

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. In November 2014, PDF began featuring stories about and information for caregivers of people with Parkinson's disease on its website, as part of the “All the Ways Care Partners Care” campaign in recognition of National Family Caregivers Month.[63] PDF expanded upon its offerings for caregivers in 2015 by hosting a special online seminar offering advice for Parkinson's care partners on cognitive issues[64] as well as conducting a survey of caregivers to get feedback for future educational content.[65]

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 stream live on the PDF website, and are available for viewing afterwards.[66] The current PD ExpertBriefings series, scheduled to run from summer 2015 through spring 2016, features topics chosen through collaboration with regional Parkinson's disease organizations, including nutrition and Parkinson's disease, advice for Parkinson's disease care partners, and anxiety in people with PD.[67] 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.[68]

PD ExpertBriefings are part of PDF's Online Seminar program, and are sponsored by an educational grant from Acadia Pharmaceuticals.[67]

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.[69] It includes an online gallery where visitors can browse artwork — including paintings, drawings, photographs, poetry and sculpture — created by more than 400 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.[70] Participants in the project may also donate their works to support PDF.[71]

In addition to raising awareness, the Creativity and Parkinson's project and calendar also provide therapeutic value to participants. According to PDF's vice president of scientific affairs, James Beck, the concentration and use of hand and eye muscles in producing artwork help combat some Parkinson's disease symptoms.[72] The therapeutic value of the Creativity and Parkinson's project was validated by a clinical study, conducted at Sheba Medical Center at Tel Aviv University in Israel, which showed that people with Parkinson's disease who take dopaminergic medications show enhanced verbal and visual creativity.[73] The Creativity and Parkinson's project may provide an outlet for this creativity among participating PD patients.[74]

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 contains more than 600 panels created by individuals and groups in 47 states and 14 countries.[75] The quilt is now available for rent to raise awareness about Parkinson's at local community events.[76]

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 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.[77]

PDF announced new members of the PPAC in July 2014. The Advisory Council's current chair is Linda Morgan, M.B.A., R.Ph., of Asheville, NC, and the vice chair is Karen Smith of Evansville, IN. As PPAC chair, Morgan also serves as a member of PDF's Board of Directors.[78]

Women and PD Initiative

In fall 2014, PDF announced a new program to explore gender inequalities in Parkinson's disease research and treatment, and better meet the needs of women with PD. The Women and PD Initiative launched in summer 2015 with a conference that brought together 25 women leaders in the Parkinson's community to explore some of the challenges women with PD face and discuss potential solutions.[79] The conference addressed topics including psychology, sexuality, movement disorders, and physical therapy as they specifically relate to women with PD.[80] Conference sponsors included Eugenia Brin (mother of Google co-founder Sergey Brin), who lives with PD.[81]

Following the conference, the initiative's ongoing goals for participants are to advocate for the specific needs of women with PD in their communities, to educate both the public and the medical community about the differences in Parkinson's disease between men and women, and to encourage more women to participate in clinical trials.[82]

Along with others, PDF research advocate and women's rights activist Robin Morgan is one of the chief architects of the Women and PD Initiative.[79] Morgan announced her own Parkinson's disease diagnosis in April 2013.[83]

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.[84]
  • 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. Founding 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.[85] Members added after AIRPO's launch include: the Dallas Area Parkinsonism Society, the Parkinson's Association (southern California), the Parkinson Support Center of Kentuckiana, and Neuro Challenge Foundation for Parkinson's (Sarasota, FL).[86]
  • 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.[87]
  • 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.[88]
  • 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.[89]
  • Participating in the Advisory Panel on Patient Engagement for the Patient-Centered Outcomes Research Institute (PCORI) through Veronica Todaro, PDF's Vice President of National Programs, who was appointed to the panel in spring 2015.[90]

Edmond J. Safra Visiting Nurse Faculty Program

In October 2014, PDF announced a new collaboration with the Edmond J. Safra Foundation, with the goal of expanding and enhancing the Safra Foundation's existing visiting nurse faculty program to improve care for people living with Parkinson's disease. The collaboration establishes a new comprehensive curriculum focused on Parkinson's disease for faculty members from undergraduate nursing programs enrolled in the Edmond J. Safra Visiting Nurse Program. These educators will then incorporate this knowledge when educating new nurses at their respective institutions. According to the Safra Foundation's Chairwoman, Mrs. Lily Safra, the program will provide education about caring for patients with Parkinson's disease to more than 8,000 nursing students each year.[91]

Trainings for the program will occur up to eight times annually at different locations throughout the country. Nurse faculty who wish to participate will be chosen through a competitive application process. Participants may receive continuing education credits. Through the end of 2015, 170 nurses—who in turn train 11,000 nursing students each year—had completed the program.[92]

World Parkinson Congress

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.[93] 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.[94] 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.[95] 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.[96]

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 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 vice president of scientific affairs, Dr. James Beck, and PDF's vice president of national programs, Veronica Todaro.[97]

In addition to the blog, PDF produces videos on an as-needed basis to explain breaking Parkinson's disease news and put it in perspective for the patient community. Examples include videos featuring PDF's vice president of scientific affairs, Dr. James Beck, reacting to the FDA approvals of two new Parkinson's drugs, Rytary and Duopa, in January 2015.[98][99]

In November 2014, PDF announced the launch of npj Parkinson's Disease, a new journal published in collaboration with Nature Publishing Group. The journal focuses on high-quality research and seeks to enable academics, clinicians, and patients to keep abreast of the latest scientific advances with the goal of treating and curing Parkinson's disease.[100] npj Parkinson's Disease is an open access, online-only journal. By making the journal open access, PDF seeks to provide patients and their caregivers with a resource to find up-to-date information about Parkinson's disease, with the goals of increasing engagement and participation in clinical research.[101] The inaugural editors-in-chief are David Sulzer, PhD, Columbia University, and Professor K. Ray Chaudhuri, Dsc MD, King's College London.[102]

Fundraising and partnerships

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 FY2015, 54 percent of PDF’s budget was dedicated to research; 18 percent was used for patient and professional education, information, and services to the Parkinson's community; and six percent was dedicated to advocacy. Twenty-two percent of its total budget goes toward management and fundraising.[31] PDF has received top ratings from charity watchdog organizations for its efficiency.[103]

Fundraising activities

PDF relies on a combination of individual contributions and fundraising initiatives and events to support its mission. Specific fundraising initiatives include:

  • Fundraising events, such as PDF's annual gala and Celebrate Spring! events in New York City. The gala raises funds from attendees while at the same time honoring individuals for their contributions to the Parkinson's disease community. The 2015 gala raised more than $460,000 and honored members of PDF's Platinum Society for their generous cumulative lifetime contributions in support of PDF's mission.[104] The Celebrate Spring! event 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.[105]
  • Grassroots fundraising events called PDF Champions in which people either living with Parkinson’s themselves or who have loved ones living with Parkinson’s create their own fundraising events and donate the proceeds to PDF. These events may include participating in notable running or endurance events such as the Rock 'n' Roll Brooklyn 10K[106] and the Marine Corps Marathon 10k in Washington, DC.[107] They may also include organizing athletic events such as golf outings or cultural events such as concerts whose proceeds support PDF.[108][109] 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.[110]
  • "Helping Hours," or social events organized by PDF supporters in which attendees enjoy a night out and also raise funds.[111] Examples include a “Tequila & Tapas” event organized by an individual with a direct family connection to Parkinson's disease.[112]
  • Parkinson's Awareness Month activities, which include various fundraising, support, and awareness initiatives 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 and awareness events and displays in local communities.[113]
  • Community driven fundraising events, such as the Pies for Parkinson's Challenge. Created by PDF supporter Justin Conner of Harrisburg, PA, Pies for Parkinson's is a social media based fundraising challenge in which participants agree to either donate $100 to PDF or donate $10 and take a pie to the face. Participants take a video of themselves completing the challenge and post it on social media sites such as Facebook, where they challenge others to participate.[114] PDF created a page on its website to support this challenge in August 2014.[115]

Partnerships

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.[116]

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.[117] The Light of Day Foundation also organizes Light of Day Winterfest, an annual music festival that takes place over the course of several days in New Jersey. PDF is among several Parkinson's organizations that receive part of the proceeds, which have totaled more than $3 million since the event's inception in 2000. Winterfest attracts many notable musical acts, including Bruce Springsteen, who has performed at the event in 11 out of its 15 years.[118]

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.[119] 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.[120]

Founding and leadership

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.[121] His widow, Page Morton Black served as PDF’s chairman emeritus until her passing in July 2013.[122][123]

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.[124] 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.[125] Other board members include Richard D. Field, co-founder of the online lending marketplace LendingTree, LLC.[126]

On the staff side, Robin Elliott, a career professional in development, communications and nonprofit management, serves as PDF’s president.[127] Elliott served as executive director from October 1996 until June 2013, when he was named the organization’s president.[122] Other key staff members include James Beck, Ph.D., PDF's vice president of scientific affairs, who oversees the organization's research efforts,[128] and Veronica Todaro, M.P.H., PDF's vice president of national programs, who oversees the organization's patient engagement efforts.[129]

Location

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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