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Parkinsonís Disease Foundation Graduates 40 New Ambassadors for Parkinson's Research, Expanding its National Network

Forty people living with Parkinson’s disease (PD) recently became the newest members of a research advocacy network led by the Parkinson’s Disease Foundation (PDF).  Last week in New Jersey, the group completed a three-day training program, the Third Annual PDF Clinical Research Learning Institute, which has prepared them to advocate for the inclusion of people with Parkinson’s in therapy development. 

The new class is composed of scientists, teachers, local business owners, nurses and other diverse individuals from 22 states.  During the in-person training program, research advocates participated in courses focusing on the science of Parkinson’s and strategies for influencing research decision-making.  The faculty included national experts, such as representatives from the National Institutes of Health (NIH) and clinical researchers.

The newly-trained research advocates expand PDF’s network to comprise over 100 individuals from 36 states.  Among their activities, research advocates are educating their communities about clinical study participation; partnering with industry, academia and government to ensure the voices of people with Parkinson’s are heard; working with scientists to design, run and review research studies; and serving as formal representatives on local, state and national clinical research review and advisory boards.

Doug Lindley of Montgomery, Alabama, is one of the new advocates.  Mr. Lindley said of his training, “Those of us living with Parkinson’s day in and day out have an urgency to find some way to reverse or slow down the disease that impacts our lives.  By serving as a clinical research advocates, and educating the newly diagnosed about clinical trials, we can empower others and advance medical research to come closer to this goal.  After seeing the energy and determination of my 39 colleagues this past week, I feel hopeful that we can spread this enthusiasm to others across the country and make a difference in Parkinson’s research.” 

Faculty member Mickie Welsh, R.N., D.N.Sc., commented on the training, “It is important to recognize that we as health care professionals share in the responsibility to expand Parkinson’s research advocacy across the country.  So, as the newest class of PDF research advocates returns home to begin its work, I will also be working to establish a clinical research consortium in southern California, that will build upon the enthusiasm we experienced at the Learning Institute.” 

If you would like to learn more about this program or if you would like to speak with PDF about partnering with a research advocate at your institution, clinical study or support group, please call (800) 457-6676, email info@pdf.org or visit www.pdf.org

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 PDF Research Advocates
PDF research advocates are a group of more than 100 individuals active in 36 states who work to bring educated consumer voices to important issues in Parkinson’s therapy development.   Research advocates develop their skills through an annual three-day program, the PDF Clinical Research Learning Institute, and continue to grow their advocacy knowledge and connections through continuing education opportunities and tools provided by PDF.  The Learning Institute was launched in 2008, based on the premise that all too often, the perspectives of people with Parkinson's are excluded from the decision-making that advances new therapies.  It is building a growing network of research advocates who 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 disease (PD) by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $85 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world and has dedicated over $34 million to support people with Parkinson’s and their families and caregivers through our educational and advocacy programs.

At the heart of PDF's work is the participation of people with Parkinson's.  Whether it is through our People with Parkinson's Advisory Council, which advises PDF on all aspects of its work, or the Clinical Research Learning Institute, which trains people with PD to play a part in clinical research, the perspective of people living with Parkinson's ensures that PDF’s work is on target and meets the needs of the community.

Source Date: Oct 28 2010