NEW YORK, May 24, 2016 /PRNewswire-USNewswire/ -- The Parkinson's Disease Foundation® (PDF®) is pleased to mark the tenth year of its People with Parkinson's Advisory Council and welcome five new members. Created in 2006, the council is made up of people living with Parkinson's and care partners who drive PDF's goals of ending the disease and improving the lives of those affected by it.
"As the PDF People with Parkinson's Advisory Council marks a new decade, we renew our commitment to representing the community's urgency for better treatments and a cure, and to guiding PDF toward the programs that best meet community needs," said Daniel Novak, Ph.D., of Fort Worth, TX, who was recently elected Chair of the advisory council. "As a pioneer in patient engagement, PDF has long understood that an informed and empowered patient community is instrumental to ending this disease."
Advisory council members guide PDF's mission and priorities; identify and solve unmet needs; provide input on programs; and serve as liaisons to the community. The advisory council has helped to prompt some of PDF's more important initiatives, including its Community Choice Research Awards, which seek feedback from the patient community on research; its patient education materials, including the popular Parkinson's Disease Resource List and bi-monthly webinars; and its innovative patient advocacy programs, including the newly launched Women and PD Initiative and the PD SELF program.
The advisory council's newest members represent a wide range of communities, professions and personal experiences. They include the following individuals:
Mary Bendelow, Ph.D., of Conifer, CO: a retired communications consultant who currently serves as a tour director for US and Canadian national parks.
Andrée Jannette of West Chester, PA: a freelance writer and photographer with more than 20 years of experience working in strategic traditional and digital communications.
Rebecca Miller, Ph.D., of New Haven, CT: a clinical psychologist, Director of Peer Support and Family Initiatives at Connecticut Mental Health Center and Assistant Professor at Yale School of Medicine, Department of Psychiatry.
Leslie Peters of Colorado Springs, CO: a health care coordinator, care partner to her husband who lives with Parkinson's and former care partner to her late mother-in-law who lived with the disease.
Paul Rohrlich, Ph.D., of Falls Church, VA: a retired foreign service officer with more than 25 years of experience working as an economic, environment and science officer with the US Department of State.
"Over the past decade, PDF has benefitted from the guidance and wisdom of more than 40 members of this advisory council, who have helped us to better understand and address community needs and who have worked tirelessly to improve the lives of people with Parkinson's," said Robin Anthony Elliott, PDF President. "For PDF, these accomplishments are proof that engaging the patient community in our work is not only the right thing to do; it is also effective."
In other actions, Mr. Novak, due to his election as Chair, subsequently becomes a member of the PDF Board of Directors, and member A.C. Woolnough, of Sandpoint, ID, was elected Vice Chair.
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 Patient Leadership at PDF
As part of the Parkinson's Disease Foundation® (PDF®) strategy to end Parkinson's, PDF mobilizes leaders in the patient community to help us more quickly solve, treat and end the disease. PDF plays an integral role in shaping patient-centered research and care by advising government on research priorities, collaborating with industry to create models of patient engagement and partnering with academic centers to develop groundbreaking programs that reach underserved communities. This work began more than a decade ago with PDtrials, established in 2004 as the first website and coalition to help patients understand and find clinical trials; continued with the creation of the PDF People with Parkinson's Advisory Council in 2006, the first council of its kind in the community; expanded with the growth of the Parkinson's Advocates in Research program since 2008, which has trained more than 260 people with Parkinson's and care partners to serve on the frontlines with professionals seeking better treatments for their disease; and is reaching new communities with the recent launch of the Women and PD Initiative and PD SELF program, which are training patient advocates to address unmet needs. In 2016, PDF is investing $500,000 for patient leadership 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 by funding promising scientific research while supporting people living with Parkinson's disease through educational programs and services. Since its founding in 1957, PDF has dedicated nearly $110 million to fund the work of leading scientists throughout the world and nearly $47 million to support education and advocacy programs.
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SOURCE Parkinson's Disease Foundation