Parkinson's Disease Foundation

Parkinson's Disease Foundation
Founded 1957
Founder William Black
Location
Area served
United States
Website www.pdf.org

The Parkinson’s Disease Foundation is a nonprofit organization that conducts research, education, and public advocacy related to Parkinson's disease.

History

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.[1] His widow, Page Morton Black served as PDF’s chairman emeritus until her passing in July 2013.[2][3]

In August 2016, PDF and the National Parkinson Foundation finalized a merger of NPF into PDF.[4]

The People with Parkinson's Advisory Council (PPAC) is a committee that provides the perspective of people who have PD to the foundation.[5][6]

Research support and funding

PDF's research funding program includes basic and clinical research.[7][8]

In 2014, Genetic Engineering & Biotechnology News named PDF number seven in its list of the top 30 grant-giving disease foundations.[9]

PDF's Parkinson's Advocates in Research (PAIR) program encourages people with PD to participate in clinical trials; lack of trial participants is one of the chief obstacles to advancing Parkinson's disease clinical research. The program also provides education and support for trial participants, and ensures that their concerns are heard by people running trials.[10][11][12] PAIR advocates also serve as spokespeople for the Parkinson's disease community in local and national media.[13][14]

Patient education and support

Through PDF's National HelpLine, a team of specialists provides information and education to people with Parkinson's disease and their families. 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,[15] as well as tips and information for patients with Parkinson's disease traveling via airplane.[16]

Advocacy

PDF coordinates a commemorative quilt project, with panels submitted by people who are affected by Parkinson's.[17]

References

  1. "Education: Joy in Giving". Time Magazine. 18 January 1960. Retrieved 15 July 2013.
  2. "Darien Business Leader Appointed Chair Of Parkinson's Disease Foundation Board". Hartford Courant. 22 June 2013. Retrieved 15 July 2013.
  3. "Page Black Obituary". New York Times. 22 July 2013. Retrieved 25 July 2013.
  4. "National Parkinson Foundation (NPF) and the Parkinson's Disease Foundation (PDF) Complete Merger to Form the Parkinson's Foundation". PR Newswire. National Parkinson Foundation. Retrieved 16 February 2017.
  5. Kunkle, Frederick (March 2016). "Take Action: For many patients and their families, advocacy is about helping themselves and others—and they say anyone can do it". Neurology Now. 12 (1): 24–26. doi:10.1097/01.NNN.0000480824.32028.d1. Retrieved 23 April 2016.
  6. Peters Smith, Barbara (18 July 2014). "A national voice for people with Parkinson's disease". Sarasota Herald-Tribune. Retrieved 14 October 2014.
  7. Ferreira, Leonor Mateus. "Applications Open For Parkinson's Disease Foundation's Research Grants". Parkinson's News Today. Retrieved 3 November 2015.
  8. "PDF Providing Grants to Speed New Parkinson's Treatments". Drug Discovery & Development Magazine. Retrieved 8 April 2014.
  9. "Top 30 Grant-Giving Disease Foundations: 2014 Edition". Mary Ann Liebert, Inc. Genetic Engineering & Biotechnology News. 16 June 2014. Retrieved 18 July 2014.
  10. Key, Jessica R. (14 February 2013). "Parkinson's disease affects Blacks, men". Indianapolis Recorder. Retrieved 23 April 2013.
  11. Fleisher, Chris (January 30, 2012). "Bringing Patients' Voices Into Parkinson's Research". Valley News. Archived from the original on February 3, 2012.
  12. "Parkinson's Disease Foundation adds 27 research adovcates". CenterWatch News Online. Retrieved 19 February 2012.
  13. Akhter, Murtaza (16 May 2012). "Gene Predicts Parkinson's Progression". ABC News. Retrieved 10 October 2012.
  14. Killeen, Wendy (3 October 2013). "Putting knowledge to work". The Boston Globe. Retrieved 4 November 2013.
  15. Crane, Kristine (27 October 2014). "Do You Have Parkinson's Disease or a Parkinsonism?". U.S. News & World Report. Retrieved 6 January 2015.
  16. Burbank, Linda (3 December 2014). "Traveler's Aide: Challenges of flying with Parkinson's". USA Today. Retrieved 6 January 2015.
  17. Caudell, Robin "Parkinson's disease quilt raises global awareness", Plattsburgh Press Republican, September 20, 2010.
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