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Parkinsonís Disease Foundation Invites Community to PAIR Up for Parkinsonís Research, Address Inequalities in Research Studies

Grassroots PDF Research Advocates Address Inequalities to Ensure More Effective Treatments for All People with Parkinsonís Disease

The Parkinson’s Disease Foundation® (PDF®) and its Parkinson’s Advocates in Research (PAIR) program invite the community to join in speeding new treatments for Parkinson’s disease, with a special focus on reaching new communities, by visiting www.pdf.org/pair.

The cornerstone of the PAIR program is a network made up of more than 200 people with Parkinson’s disease and care partners who are working to identify and solve the barriers that delay new treatments.  PDF Research Advocates target critical issues such as the community’s access to information about Parkinson’s disease research, availability of transportation to studies and strategies for volunteer recruitment.  After the latest training in October in Oak Brook, IL, Research Advocates are taking on another issue – inequality in research studies.

“We need to fix inequalities in research, not for the good of any single community, but for everyone living with Parkinson’s disease who hopes for more effective treatments,” said Allison W. Willis, M.D., a PAIR faculty member from the Washington University School of Medicine in St. Louis, MO.

To help us understand and treat Parkinson's disease, research studies require volunteers from the Parkinson's disease community.  Yet studies need more volunteers and in particular, volunteers of differing races, genders, ages and geographic areas.  “The latest research in Parkinson’s disease is promising,” said James Beck, Ph.D., PDF’s Director of Research Programs. “But scientists know that different groups of people can respond to treatments in different ways.  Therefore, to fully understand Parkinson’s disease we need to study a broader array of people who live with it and the differences between them.”

Among the 26 individuals who completed PDF's training last month are new Research Advocates Terri Peacher-Ransom and Don Ransom of Indianapolis, IN.  The couple, involved because of Mr. Ransom’s Parkinson’s disease diagnosis, said, “Dr. Willis’s talk reignited our inner fire and our desire to help others.  As members of a minority, we see that not everyone is well-represented in research; therefore we want to be a voice for minority groups.  Our work with PAIR will focus on ensuring that under-represented communities – whether due to geography, race or gender – are part of the solution.”

Are you a person with Parkinson’s disease, a care partner or a member of the research community?  Connect with a Research Advocate in your community by contacting PDF at (800) 457-6676 or info@pdf.org.  Members of the community are also invited to learn about advocating for Parkinson’s disease research by completing PDF’s free Parkinson’s Advocates in Research online course at www.pdf.org/paironline.

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 disease.

About Parkinson’s Advocates in Research 
Parkinson's Advocates in Research (PAIR) is a signature program of the Parkinson's Disease Foundation (PDF).  Through in-person trainings and an online course, it provides people touched by Parkinson's with the knowledge and skills needed to "pair up" with scientists and health professionals in advancing research and speeding new treatments.  The cornerstone of the program is a national network of 200 Research Advocates from 42 states who guide research, address gaps and obstacles, and educate their communities about research.  Their areas of expertise include review of clinical study protocols, development of clinical trial recruitment plans and education of support groups about local research opportunities.  Learn more about the program and getting involved in Parkinson’s disease research by completing PDF’s free Parkinson’s Advocates in Research online course at www.pdf.org/pair. 

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 disease 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 $96 million to fund the work of leading scientists throughout the world and over $40 million to support national education and advocacy programs. 

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Source Date: Nov 11 2012