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.
For a complete list of the PDF People with Parkinson's Advisory
Council, visit www.pdf.org/ppac. For more
information, contact the Parkinson's Disease Foundation at (800) 457-6676 or info@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 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.
To view the original version on PR Newswire, visit:http://www.prnewswire.com/news-releases/parkinsons-disease-foundation-marks-tenth-year-of-people-with-parkinsons-advisory-council-300274101.html
SOURCE Parkinson's Disease Foundation
http://www.biospace.com/News/parkinsons-disease-foundation-marks-tenth-year-of/420803
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