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Research Triangle Scientists PAIR with Advocates to Recognize Parkinsonís Research Participants

Members of the Parkinson’s Advocates in Research (PAIR) program of the Parkinson’s Disease Foundation (PDF) are collaborating with research triangle area scientists at the Marriott at Research Triangle Park in Durham, NC, on Saturday, April 30, to recognize the role of people living with Parkinson’s disease (PD) in research.

Nina Browner, M.D., of University of North Carolina Health Care, Keith L. Hull, Jr., M.D., of Raleigh Neurology Associates, P.A., and Burton Scott, M.D., Ph.D., of Duke University Medical Center, are collaborating for the forum, “Parkinson’s Research: The Role of People with Parkinson’s,” which runs from 11:00 AM to 2:00 PM.  The forum includes a luncheon and information on current research studies and advances in North Carolina.  

Research participation – in the clinical research studies that test experimental therapies for the disease – is of utmost importance for Parkinson’s.  The disease has neither a cure, nor treatments that can reverse its progressive course.  According to the research advocates with PDF’s PAIR program, including Linda M. Morgan, M.B.A., R.Ph., of Asheville, the true path to scientific progress involves a new model of conducting science – one which is managed by a research partnership between scientists and those living with the disease. 

She and her colleagues say that it is vital to recognize that the development of new therapies is due not only to hard-working scientists, but also to people with Parkinson’s who among other activities, take on the role of study participation, which can range from relatively simple tasks such as filling out a survey to those as complex as taking a daily experimental medication or even undergoing an experimental surgery.  Saturday’s forum recognizes individuals who have made this commitment. 

Ultimately, Ms. Morgan and her colleagues – a growing network of more than 100 advocates from 36 states – envision a scientist-patient partnership that drives scientific decisions.  While many advocates have already established this type of partnership at institutions across the country, she notes that the idea is still growing.  The first step is collaborating with leaders like Drs. Browner, Hull and Scott to recognize the contributions of people with Parkinson’s to clinical research.

Ms. Morgan added, “More and more people living with Parkinson’s and their loved ones are taking charge of research – whether by participating in studies, raising awareness and funds, or educating others about studies.  We need to recognize this participation and the important perspective that people with Parkinson’s have to offer science.  On behalf of PDF and its advocates – who are working every day to advance clinical research – we thank Drs. Browner, Hull and Scott and their institutions for being among the first in the nation to recognize the importance of formal collaboration with people with Parkinson’s.”

According to Dr. Scott, he and his colleagues at Duke, UNC and Raleigh Neurology Associates readily agreed to the idea of recognizing individual contributions, “Any new breakthroughs in Parkinson’s treatments occur only because people living with Parkinson’s – and sometimes those who do not have Parkinson’s – dedicate their time to research studies.  We should jump at the chance to thank these individuals who have played an important role in advancing science right here in our community.”

Representatives of the media interested in covering the event are asked to RSVP by Friday, April 29 to or (800) 457-6676.

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
Parkinson’s Advocates in Research (PAIR) is a growing network of more than 100 research advocates living with Parkinson's from 36 states who work to bring educated consumer voices to important issues in Parkinson’s therapy development. These trained research advocates are actively collaborating with scientists, government agencies and private industry, to change the role that people with Parkinson’s play in the design and implementation of Parkinson’s research and programs.  

About the Parkinson’s Disease Foundation
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are 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 $85 million to fund the work of leading scientists throughout the world and over $34 million to support national education and advocacy programs.