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Parkinsonís Disease Foundation Welcomes 27 Research Advocates Working to Speed New and Effective Treatments for Parkinsonís
- Oct 20 2011
The Parkinson’s Disease Foundation (PDF) welcomes 27 new members to its national network of Research Advocates who are influencing research and speeding the development of new and effective treatments for Parkinson’s. This week in New Jersey, the members from the Northeast region are completing an intensive three-day training to prepare them to join the network, known as Parkinson’s Advocates in Research.
During the training, the newest PDF Research Advocates are taking part in rigorous sessions on the science of Parkinson’s and the process that brings new treatments to market. They are doing so under the guidance of leaders from institutions such as the National Institutes of Health in Bethesda, MD. Armed with advocacy skills, they will return to their communities to take on research-related activities – including serving on research advisory boards and speaking about clinical research at conferences and support groups – through which they can share their unique perspectives as people touched by Parkinson’s disease.
As PDF Executive Director Robin Elliott noted, “We believe that when members of the Parkinson’s community are equal stakeholders – alongside research professionals, government agencies and private industry – their presence will improve the design, conduct and outcomes of clinical studies.”
The diverse group of educators, scientists, lawyers and other professionals were chosen through a competitive application process open to those from the states in the Northeast region, stretching from Maine to Virginia. All PDF Research Advocates are living with or are care partners to those with Parkinson’s. In the upcoming year, the Northeastern regional training will be followed by three additional trainings around the United States.
Peter Adams of Burlington, VT, is one of several PDF Research Advocates nominated by James Boyd, M.D., a Parkinson’s specialist from the University of Vermont. Dr. Boyd spoke about his reasons for supporting Parkinson’s Advocates in Research, "There is no more powerful endorsement of clinical research than that of a person with Parkinson's disease who has participated. The PDF training is a wonderful opportunity for people with Parkinson’s to advance their knowledge and become equipped with the tools they need to become effective advocates for clinical research at the local, regional and hopefully national level."
Mr. Adams added, “As PDF Research Advocates, we can bring important perspectives to decisions about research and how to improve the testing of new treatments. All of us look forward to partnering with our local research professionals, hospitals, support groups, agencies and industry to begin making a difference for the one million people in the United States living with Parkinson’s.”
To speak with us about partnering with a PDF Research Advocate at your institution or support group, or to learn about our Southern regional training in March 2012, please call (800) 457-6676, email firstname.lastname@example.org or visit www.pdf.org/pair.
About Parkinson’s Disease
Parkinson's disease is a progressive neurological disorder that affects nearly one million people in the US. Although promising research is being conducted, there is currently no cure for Parkinson's.
About Parkinson’s Advocates in Research (PAIR)
Parkinson’s Advocates in Research is a growing network of 130 Research Advocates from 34 states who influence research and speed the development of new and effective treatments for Parkinson’s. Research Advocates are actively collaborating with research professionals, government agencies and private industry to ensure the unique perspectives of people touched by Parkinson’s are included in research decisions and implementation. PDF Research Advocates are key partners in PDF’s mission to support the research and ideas that will improve the lives and futures of people touched by Parkinson’s.
About Parkinson’s Disease Foundation
The Parkinson’s Disease Foundation® (PDF®) is a leading national presence in Parkinson’s disease research, education and public advocacy. PDF is working for the nearly one million people in the US who live with Parkinson’s by funding promising scientific research while supporting people living with Parkinson’s through educational programs and services. Since its founding in 1957, PDF has dedicated over $90 million to fund the work of leading scientists throughout the world and over $37 million to support national education and advocacy programs.