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Parkinson's Foundation

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Parkinson's Foundation
Founded1957; 67 years ago (1957)
FounderJeanne C. Levey; William Black
13-1866796
Legal status501(c)(3) Non-profit
FocusParkinson's disease research and resources [1]
HeadquartersMiami, Florida; New York City, New York
J. Gordon Beckham, Jr.
John L. Lehr
Chief Scientific Officer
James Beck, PhD
Websiteparkinson.org

The Parkinson's Foundation is a national organization that funds research and provides educational resources to Parkinson's disease patients and caregivers. The Parkinson's Foundation was established in 2016 through the merger of the National Parkinson Foundation and the Parkinson's Disease Foundation. The Parkinson's Foundation has headquarters in Miami and New York City, in addition to 17 chapters throughout the United States.[2]

History

[edit]

1957–1960s

[edit]

The organizations that merged to create the Parkinson's Foundation in 2016 were both created in 1957. The National Parkinson Foundation was founded by Jeanne C. Levey in Miami and the Parkinson's Disease Foundation was founded by William Black in New York.[3][4][5]

The founding organizations funded researchers such as Melvin Yahr and H. Houston Merritt.[6][7]

In 1965, Parkinson's Foundation funding led to the establishment of the Columbia University Medical Center's basic science laboratories in the William Black Building.[7][6]

In 1969, Yahr and Parkinson's Foundation colleagues published results of the first double-blind trial of levodopa.[8]

1970s–1980s

[edit]

The Parkinson's Foundation began funding summer fellowships for medical students in the 1970s.

In 1971, Roger C. Duvoisin developed Columbia University's Rating Scale, the forerunner to the Unified Parkinson Disease Rating Scale.[9] In the same year, the Parkinson's Foundation and Merck, Inc. funded Dr. Yahr's double-blind clinical trial of carbidopa/levodopa (Sinemet), which remains the gold standard therapy for Parkinson's disease.[10]

In the 1980s, the Parkinson's Foundation began investing in movement disorder training fellowships at Columbia University and Rush University.

In 1985, the Parkinson's Foundation established its Centers of Excellence Network, which today consists of 51 designated medical centers worldwide that deliver care to more than 196,000 Parkinson's patients.[11]

1990s–2000s

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With funding from the Parkinson's Foundation, Duvoisin and his team described the Contursi kindred, the first description of inherited Parkinson's, in 1990.[12]

In 1994, the Parkinson's Foundation joined several other organizations to create a scientific research fundraiser, the Parkinson's Unity Walk.[13]

In 2002, a research team at Columbia University funded by the Parkinson's Foundation found evidence that Parkinson's requires the alpha-synuclein protein, a now well-known hallmark of the disease.[14]

2010s–2020s

[edit]

In 2011, the Parkinson's Foundation launched Moving Day, its signature fundraising walk for Parkinson's.[15]

In 2019, the Parkinson's Foundation launched PD GENEration, a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for Parkinson's patients.[16]

In 2022, the Parkinson's Foundation partnered with Parkinson's UK to establish the Venture Philanthropy Fund, which invests money into Parkinson's disease research.[17]

Research

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Clinical studies

[edit]

Parkinson's Outcomes Project[18]

[edit]

The Parkinson's Outcomes Project was started in 2009 and as of 2022 remains the largest-ever clinical study of Parkinson's disease. The longitudinal study is executed through the Parkinson's Foundation Global Care Network and monitors the symptoms and quality of life of Parkinson's patients to determine best practices in healthcare and establish standard treatment protocols.[19]

The Parkinson's Outcomes Project found that depression and anxiety are the number one factors impacting the overall health of Parkinson's patients.[20] The study also found that increasing physical activity to at least 2.5 hours a week can slow decline in quality of life.[21]

PD GENEration: Mapping the Future of Parkinson's Disease[22]

[edit]

PD GENEration: Mapping the Future of Parkinson's Disease is a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for Parkinson's patients.[23]

Venture Philanthropy Fund

[edit]

In 2022, the Parkinson's Foundation established the Venture Philanthropy Fund. This fund advances Parkinson's disease research by investing money into the Parkinson's Virtual Biotech Fund, the drug development arm of Parkinson's UK.[17]

Affiliations

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Global Care Network

[edit]

The Parkinson's Foundation Global Care Network is a healthcare network that provides care to Parkinson's patients.[11] The network is composed of Centers of Excellence and Comprehensive Care Centers.

A Parkinson's Foundation Center of Excellence is a medical center with a specialized team of neurologists, movement disorder specialists, physical therapists, occupational therapists, mental health professionals and others who are up to date on the latest Parkinson's medications, therapies and research.[24][25] The Foundation has designated 60 medical centers around the world as part of its Global Care Network.[26]

Parkinson's Foundation Comprehensive Care Centers are medical facilities with multi-disciplinary teams providing Parkinson's care.[26] Each center is required to meet care, professional training, community education and outreach criteria.

The Parkinson's Foundation is affiliated with the following institutions:

Country Medical Institutions
Australia Victorian Comprehensive Parkinson's Program
Canada McGill University Parkinson Program

Pacific Parkinson's Research Centre, University of British Columbia

Toronto Western Hospital Movement Disorders Center

University of Alberta

University of Calgary

University of Western Ontario, London Health Sciences Centre

Germany Phillips University
Israel Tel Aviv Sourasky Medical Center
Italy (Fresco Network) Moriggia-Pelascini Hospital

Policlinico of Milan

San Martino Hospital

Santa Chiara Hospital

Santa Maria della Misericordia Hospital (Grosseto)

Villa Margherita

Netherlands Nijmegen Parkinson Center
Singapore Singapore National Neuroscience Institute
Taiwan National Taiwan University Hospital, Center for Parkinson & Movement Disorders
United Kingdom Derby Hospitals NHS Foundation Trust and University of Nottingham

Kings College Hospital

United States Barrow Neurological Institute

Baylor College of Medicine

Beth Israel Deaconess Medical Center

Cleveland Clinic Center for Neurological Restoration

Cleveland Clinic Lou Ruvo Center for Brain Health

Columbia University Irving Medical Center

Dartmouth Hitchcock Medical Center

Duke Health Movement Disorders Center

Emory University

Hartford HealthCare

Indiana University School of Medicine

Jefferson Health's Comprehensive Parkinson's Disease & Movement Disorder Center

Johns Hopkins Parkinson's Disease & Movement Disorders Center

Keck School of Medicine of USC

Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders at NYU Langone Medical Center

Massachusetts General Hospital

Medical University of South Carolina

Medstar Georgetown University Hospital

Mount Sinai Beth Israel

Northwestern University Movement Disorders Center

Ochsner Neuroscience Institute

Oregon Health & Science University Parkinson Center

Rush University Medical Center

Spectrum Health

Struthers Parkinson's Center

The Queen's Medical Center

UNC School of Medicine

University of Arkansas for Medical Sciences

University of California, San Diego Movement Disorder Center

University of California, San Francisco

University of Colorado Movement Disorders Center

University of Florida Center for Movement Disorders and Neurorestoration

University of Iowa

University of Kansas Medical Center

University of Miami Leonard M. Miller School of Medicine

University of Pennsylvania Movement Disorder Center

University of Rochester Medical Center

University of South Florida Parkinson's Disease and Movement Disorders Center Medical College of Georgia, Augusta University

University of Tennessee Medical Center

University of Utah

Vanderbilt University Medical Center

Virginia Commonwealth University

Research centers

[edit]

The Parkinson's Foundation has designated four institutions as research centers: Columbia University Medical Center, the University of Florida in collaboration with Emory University, the University of Michigan in collaboration with the University of Texas Southwestern Medical Center, and the Yale School of Medicine.[27] These institutions receive $2 million in Parkinson's Foundation funding over four years to further research that advances the understanding and treatment of Parkinson's.[28]

Grants and awards

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Since 1957, the Parkinson's Foundation has invested more than $425 million in Parkinson's disease research and clinical care.[29]

Awards for institutions

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The Parkinson's Foundation Research Center designation provides funding for team science at institutions working on a thematic area of Parkinson's disease.[28]

The Institutional Movement Disorders Fellowship provides an institution with the funds to support the two-year long training of an incoming movement disorders fellow.[30]

Awards for independent investigators

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George G. Kaufman Impact Awards fund projects that are in need of support to impact the Parkinson's community.[31]

Stanley Fahn Junior Faculty Awards provide funding to early career scientists to further their Parkinson's disease research.[32]

Conference Awards support the gathering of experts working to address unsolved clinical or basic science problems relevant to Parkinson's disease.[33]

Fellowships and early career awards

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The Launch Award is an award for postdoctoral researchers who are transitioning to independent research careers in Parkinson's.[34]

Postdoctoral Fellowships are two-year fellowships for scientists who have recently completed their Ph.D. training or neurology residencies.[31]

Visiting Scholar Awards support the travel and housing of scholars while visiting host laboratories that conduct Parkinson's research.[34]

Summer Student Fellowships provide students interested in Parkinson's disease with an opportunity to conduct research through 10 weeks of clinical or laboratory work.[34]

The Melvin Yahr Early Career Award in Movement Disorders Research supports neurologists after residency.[35]

Partnership Awards are collaborative partnerships supporting clinician-scientist training, patient-oriented Parkinson's research and medical student Parkinson's studies.[34]

The Nurse Faculty Award is seed grant funding intended to support Edmond J. Safra Visiting Nurse Scholars.[36]

The Physical Therapy Faculty Award is seed grant funding intended to support Physical Therapy Faculty alumni.[36]

Advocacy

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The Parkinson's Foundation partners with The Michael J. Fox Foundation to host the Parkinson's Policy Forum.[37] The event brings together community members and researchers for research updates, policy briefings, advocacy trainings and networking opportunities.

The People with Parkinson's Advisory Council is a patient leadership group. The council was created in 2006 and is composed of people with Parkinson's disease and caregivers who serve as advisors to the foundation.[38]

The Parkinson's Foundation Research Advocates program trains Parkinson's patients and their caregivers to collaborate with Parkinson's disease scientists in research.[39][40] The program was established in 2008 and has trained more than 350 participants.[41]

Programs and services

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Helpline

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The Parkinson's Foundation Helpline is staffed by nurses, social workers and health educators.[42] PD Conversations is an online support network that allows individuals to ask experts Parkinson's questions.[43]

Newly Diagnosed

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The Newly Diagnosed Kit includes information and resources for individuals who have recently been diagnosed with Parkinson's disease.[44]

Aware in Care

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The Aware in Care hospitalization kit provides information and resources to help Parkinson's patients stay safe during hospital visits.[45]

Virtual Education Programming

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Care Partner Program

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The series of online courses provides Parkinson's caregivers with information and tools to help care for someone living with Parkinson's disease.[46]

Expert Briefings Webinars

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The webinars highlight the latest Parkinson's disease research and updates from experts in the field.[47]

PD Health @ Home

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The virtual educational and wellness program hosts weekly online events that provide at-home resources to Parkinson's patients and caregivers. Events include Mindfulness Mondays, Wellness Wednesdays and Fitness Fridays.[48]

Substantial Matters: Life and Science of Parkinson's

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The podcast series, hosted by Dan Keller, PhD, interviews Parkinson's experts to highlight treatments and techniques for living with Parkinson's disease, as well as research updates in the field.[49]

Community Grant Program

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The grants support education and outreach programs that address unmet needs in the Parkinson's community.[50] Since 2011, the Parkinson's Foundation has invested more than $9.4 million in community-based programs.[51]

Community events

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Moving Day

[edit]

Moving Day, a Walk for Parkinson's, is the main fundraising event for the Parkinson's Foundation. Moving Day was started in 2011 and hosts events in cities across the United States.[52] The walk has raised over $40 million to advance Parkinson's disease research and improve care.[53]

Parkinson's Champions

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Parkinson's Champions is a community fundraising and endurance program.[54] Individuals plan their own events or participate in endurance races to raise funds and awareness for Parkinson's disease. The program has raised nearly $12 million.[55]

Parkinson's Revolution

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Revolution is an annual indoor cycling event that raises funds to generate awareness and advance the mission of the Parkinson's Foundation.[56] Revolution was started in 2020 and events take place in cities across the United States.[57] The cycling event has raised over $565,000 to advance Parkinson's disease research and improve care.[58]

Key people

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John L. Lehr has been the chief executive officer since 2017.[59] J. Gordon Beckham, Jr. serves as the chair of the Foundation's board of directors.[60]

Mergers, acquisitions, and partnerships

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In August 2016, PDF and NPF merged to form the Parkinson's Foundation.[61][62][63]

In October 2017, the Parkinson's Foundation acquired the Melvin Yahr International Parkinson's Disease Foundation.[6]

In January 2020, the Parkinson's Foundation partnered with Zelira Therapeutics to study the benefits of medical cannabis in PD patients.[64]

In May 2020, the Parkinson's Foundation partnered with the U.S. Department of Veteran Affairs to increase access to information about Parkinson's disease.[65] Veterans who develop Parkinson's disease can be associated with exposure to Agent Orange or other herbicides during military service.[66]

References

[edit]
  1. ^ "[1]". Parkinson's Foundation. Guidestar. December 31, 2017.
  2. ^ "Charity Summary: Parkinson's Foundation". Charity Navigator. Archived from the original on May 2, 2022. Retrieved July 1, 2022.
  3. ^ "Steady Progress". University of Miami Medicine. University of Miami. Retrieved 27 February 2019.
  4. ^ "Education: Joy in Giving". Time Magazine. 18 January 1960. Archived from the original on January 22, 2009. Retrieved 15 July 2013.
  5. ^ Saxon, Wolfgang (March 8, 1983). "William Black, Founder and Head of Chock Full O' Nuts Corp., Dies". The New York Times.
  6. ^ a b c "Parkinson's Foundation and Melvin Yahr International Parkinson's Disease Foundation Announce Merger". PR Newswire. October 26, 2017. Retrieved September 23, 2022.
  7. ^ a b "H. Houston Merritt". Columbia University Irving Medical Center Archives & Special Collections. January 9, 1979. Archived from the original on September 23, 2022. Retrieved September 23, 2022.
  8. ^ Yahr, Melvin D.; Duvoisin, Roger C.; Schear, Myrna J.; Barrett, Robert E.; Hoehn, Margaret M. (October 1969). "Treatment of Parkinsonism With Levodopa". Archives of Neurology. 21 (4): 343–354. doi:10.1001/archneur.1969.00480160015001. PMID 5820999 – via JAMA Network.
  9. ^ Ramaker, Claudia; Marinus, Johan; Stiggelbout, Anne Margarethe; Van Hilten, Bob Johannes (September 2002). "Systematic evaluation of rating scales for impairment and disability in Parkinson's disease". Movement Disorders. 17 (5): 867–876. doi:10.1002/mds.10248. PMID 12360535. S2CID 2562332 – via PubMed.
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  12. ^ Golbe, Lawrence I.; Di Iorio, Giuseppe; Bonavita, Vincenzo; Miller, Douglas C.; Duvoisin, Roger C. (March 1990). "A large kindred with autosomal dominant Parkinson's disease". Annals of Neurology. 27 (3): 276–282. doi:10.1002/ana.410270309. PMID 2158268. S2CID 31767548 – via Wiley Online Library.
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  14. ^ Dauer, William; Kholodilov, Nikolai; Vila, Miquel; Hen, Rene (October 10, 2002). "Resistance of α-synuclein null mice to the parkinsonian neurotoxin MPTP". Proceedings of the National Academy of Sciences. 99 (22): 14524–14529. doi:10.1073/pnas.172514599. PMC 137916. PMID 12376616.
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  34. ^ a b c d "Fellowships & Early Career Awards". Duke University Research Funding. October 22, 2021. Archived from the original on October 23, 2021. Retrieved August 9, 2022.
  35. ^ Chapman, Mary (September 19, 2019). "Two Parkinson's Organizations Issue a Total of $5.9M in Research Grants". Parkinson's News Today. Retrieved August 5, 2022.
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  37. ^ Chapman, Mary (March 31, 2021). "MJFF Parkinson's Policy Forum Aims to Restore US Research Funds to $25M". Parkinson's News Today. Retrieved August 8, 2022.
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  39. ^ Miller, Hawken (July 21, 2021). "Parkinson's Foundation Emphasizes Patient Role in Clinical Research". Parkinson's News Today. Retrieved August 4, 2022.
  40. ^ Killeen, Wendy (3 October 2013). "Putting knowledge to work". The Boston Globe. Retrieved 4 November 2013.
  41. ^ Feeney, Megan; Evers, Christiana; Agpalo, Danielle; Cone, Lisa; Fleisher, Jori; Schroeder, Karlin (August 2020). "Utilizing patient advocates in Parkinson's disease: A proposed framework for patient engagement and the modern metrics that can determine its success". Health Expectations. 23 (4): 722–730. doi:10.1111/hex.13064. PMC 7495075. PMID 32363785.
  42. ^ DePorter, Lori (December 9, 2021). "Virtual Resources Are a New Reality for the Parkinson's Community". Parkinson's News Today. Retrieved August 9, 2022.
  43. ^ Yarab, Nicole; Ojeda, Dianett; McClure, Jill; Janicke, Amanda; Todaro, Veronica; Pearl, Leilani; Whitlock, Catherine; Diaz, Adolfo (2020). "PD Conversations: Creation of an Online Parkinson's Community". Movement Disorders. 35 (1).
  44. ^ "Parkinson's Foundation Launches "Newly Diagnosed" National Program". Practical Neurology. October 15, 2019. Retrieved August 2, 2022.
  45. ^ Kerson, Sarah (June 22, 2022). "'Aware in Care': Parkinson's Foundation recruiting volunteers to educate hospital staff". WHYY-FM. Retrieved August 5, 2022.
  46. ^ "Navigating The Ambiguous Losses That Accompany Caregiving". Healthy Aging. July 13, 2022. Retrieved August 8, 2022.
  47. ^ Langley, Cassandra (February 10, 2022). "Free webinar to explore Parkinson's disease therapies". Seasons. Retrieved September 9, 2022.
  48. ^ "Virtual Programs and Events Available to Support PD Community Through Ongoing COVID-19 Pandemic". Practical Neurology. August 26, 2020. Retrieved August 5, 2022.
  49. ^ Skylis, MaryBeth (September 13, 2021). "Informative Parkinson's Podcasts". ParkinsonsDisease.net. Retrieved August 8, 2022.
  50. ^ "Parkinson's Foundation Grants More Than $2 Million to Local Communities for Parkinson's Programs". PR Newswire. July 21, 2022. Retrieved September 12, 2022.
  51. ^ Chapman, Mary (July 27, 2022). "Parkinson's Foundation Distributes $2M in Community Grant Programs". Parkinson's News Today. Retrieved August 5, 2022.
  52. ^ "'Moving Day Buffalo, A Walk for Parkinson's' raises funds & awareness for Parkinson's disease". Niagara Frontier Publications. September 6, 2021. Retrieved August 9, 2022.
  53. ^ Beile, Kelly Anne (May 5, 2021). "Parkinson's Moving Day set for BREC Fairgrounds, May 15". BR Proud. Retrieved August 9, 2022.
  54. ^ Tan, Andrew (August 1, 2019). "SF Marathon runner raises money for Parkinson's Foundation". San Francisco Examiner. Retrieved August 5, 2022.
  55. ^ "The RunnerBox Announces Partnership with the Parkinson's Foundation". Endurance Sportswire. The RunnerBox. February 22, 2022. Retrieved August 5, 2022.
  56. ^ Coulon, Jessica (December 16, 2019). "Got 90 Minutes? Take a Spin to Fight Parkinson's Disease". Bicycling Magazine. Retrieved August 3, 2022.
  57. ^ Chapman, Mary (November 7, 2019). "Parkinson's Foundation Launches International Cycling Event to Promote Exercise, Raise Funds". Parkinson's News Today. Retrieved August 3, 2022.
  58. ^ Fridmann, Abby (February 26, 2022). "Revolution Indoor Cycling rides to fight Parkinson's disease". WIVB-TV. Retrieved August 9, 2022.
  59. ^ "Parkinson's Foundation Appoints John L. Lehr As Chief Executive Officer". PR Newswire. January 10, 2017. Retrieved June 12, 2022.
  60. ^ "People On the Move: J. Gordon Beckham, Jr". Atlanta Business Chronicle. June 8, 2022. Retrieved August 5, 2022.
  61. ^ "National Parkinson Foundation (NPF) and the Parkinson's Disease Foundation (PDF) Complete Merger to Form the Parkinson's Foundation". PR Newswire. August 1, 2016. Retrieved February 16, 2017.
  62. ^ "Parkinson's Foundation, Inc". Guidestar. Retrieved November 10, 2018.
  63. ^ "Merger of Parkinson's support groups will better serve patients, chief executive says". Patient Daily. November 7, 2017. Retrieved February 26, 2019.
  64. ^ Chapman, Mary (January 31, 2020). "Parkinson's Foundation, Zelira Crafting Survey on Cannabis Use and Possible Benefits". Parkinson's News Today. Retrieved February 2, 2020.
  65. ^ "Parkinson's Foundation Partners with VA to Help Veterans Living with Parkinson's Disease". HealthWell Foundation. November 11, 2020. Retrieved August 2, 2022.
  66. ^ Yang, Youngsoon; Cheon, Miju; Kwak, Yong Tae (September 30, 2016). "Is Parkinson's Disease with History of Agent Orange Exposure Different from Idiopathic Parkinson's Disease?". Dementia and Neurocognitive Disorders. 15 (3): 75–81. doi:10.12779/dnd.2016.15.3.75. PMC 6427963. PMID 30906346.
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