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Parkinson's Disease Foundation Calls Upon the Community to Shape Research During Parkinson's Awareness Month

Patients and Care Partners Invited to Vote in Second Annual Community Choice Research Awards

Parkinson's Disease Foundation logo.

News provided by

Parkinson's Disease Foundation

Apr 01, 2015, 03:42 ET

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NEW YORK, April 1, 2015 /PRNewswire-USNewswire/ -- The Parkinson's Disease Foundation® (PDF®) is calling upon the community to shape research and therapy development during April, Parkinson's Awareness Month.  People with Parkinson's disease and care partners are invited to share their priorities for research through PDF's Second Annual Community Choice Research Awards from Wednesday, April 1 until Thursday, April 30, by visiting www.pdf.org/communitychoice.

"Like many other people living with Parkinson's disease, I have often wished for the opportunity to share my priorities directly with researchers.  This April, through the PDF Community Choice Research Awards, we the patients — those who are most impacted by research — have the power to exercise our voices on issues of paramount concern to us," said Diane Cook of Denver, CO, a member of PDF's People with Parkinson's Advisory Council and board member of ProjectSpark, which is partnering with PDF to fund the awards.  "I urge members of the Parkinson's disease community to submit their research priorities.  Now is our time to speak up!"

Despite promising research, there is neither a cure for Parkinson's disease nor are there medications to reverse its course.  Not only that, it takes an average of 14 years for new therapies to move from the laboratory to the pharmacy.  PDF believes that research and therapy development can be more focused and efficient when we ask people who live with Parkinson's disease which issues are most important to them.

In 2013, PDF launched the Community Choice Research Awards and identified two symptoms of Parkinson's disease — fatigue and gastrointestinal dysfunction — which receive limited attention in research, but are often troublesome for people living with the disease.  These issues are now being studied.

Based on this success, PDF is opening another round of Community Choice Research Awards.  The survey includes six questions, asking people with Parkinson's disease and care partners what is most important for researchers to study about specific aspects of Parkinson's disease, including its symptoms, day-to-day management and treatment.  Responses will be reviewed by PDF's Scientific Advisory Board to identify two community-chosen research questions for PDF support.  For each question selected, one individual who identified it as a priority will be asked to join PDF in finding an answer.

"Research and therapy development can take years, but people with Parkinson's disease need solutions now.  We know from PDF's first 'people's choice' awards that soliciting community feedback is a powerful way to align what matters most to patients with what is studied by scientists," said PDF President Robin Anthony Elliott.  "We urge people with Parkinson's disease and care partners: if you have questions that you think scientists should be spending time on, please share your insights to help us solve, treat and end Parkinson's disease."

PDF invites people with Parkinson's disease and care partners to make their voices heard during April by visiting www.pdf.org/communitychoice. 

PDF also calls upon researchers and health professionals to share with their patients and Parkinson's disease communities this unique opportunity for shaping research. Professionals can order free promotional postcards by contacting PDF at (800) 457-6676 or [email protected].

PDF thanks its People with Parkinson's Advisory Council and the ProjectSpark Foundation for their support and partnership on this initiative.

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 Awareness Month
April is recognized as Parkinson's Awareness Month.  Each year, through its You Can Make a Difference Campaign, PDF empowers people with Parkinson's disease to raise awareness about the disease and involve their communities in the cause.  PDF's You Can Make a Difference Campaign includes a free online and print toolkit, free posters in English and Spanish and awareness tools for purchase, including the official Parkinson's Awareness T-Shirt designed by 7-year-old Mabel Johnson of Pittsfield, NH, in honor of her grandmother who lives with Parkinson's disease.  This year, PDF has added to its Parkinson's Awareness Month offerings the opportunity to participate in the Second Annual Community Choice Research Awards.  Browse PDF's free tools by visiting www.pdf.org/parkinson_awareness or contacting PDF at (800) 457-6676 or [email protected].

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 $105 million to fund the work of leading scientists throughout the world and over $44 million to support national education and advocacy programs.

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SOURCE Parkinson's Disease Foundation

Related Links

http://www.pdf.org

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