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Parkinson’s Foundation Receives Award to Develop National Recommendations to Improve Care for Women with Parkinson’s

NEW YORK CITY & MIAMI — The Parkinson's Foundationhas received a $250,000 award to develop new patient-centered recommendations to improve the health of women living with Parkinson’s disease. The funding provided through a Patient-Centered Outcomes Research Institute Engagement Award will support, “Women and PD Teams to Advance Learning and Knowledge,” or “Women and PD TALK” - the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care.

“As part of our groundbreaking work to advance treatments and care for a diverse global community impacted by Parkinson’s, we are proud to launch Women and PD TALK and lead the way in addressing the unique needs of women,” said John L. Lehr, chief executive officer of the Parkinson's Foundation.  “We are grateful to the Patient-Centered Outcomes Research Institute for its support in finding solutions that can improve women’s lives.”

The Parkinson's Foundation began pursuing solutions in 2013 after identifying significant gender differences in Parkinson's treatment and care, as well as the lack of any coordinated effort to address them. Historically, care has been based on research that has focused too narrowly on men or neglected to consider relevant gender differences. For example, treatment protocols have not taken into consideration the fact that women can react differently to medications or are less likely to see specialists.

“Research is beginning to prove what the medical community has long suspected: that women experience Parkinson’s differently as it relates to diagnosis, symptoms, progression, treatment complications and care,” said Allison Willis, M.D., M.S., co-lead of Women and PD TALK and an assistant professor of neurology, biostatistics and epidemiology in the Perelman School of Medicine at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence. “We applaud the Parkinson’s Foundation for putting the unique needs of women on the map with Women and PD TALK, a project that may lead to breakthroughs for women and men.”

The Women and PD TALK project will charge multidisciplinary leadership teams, comprising experts in the patient, research, and health care communities, with creating recommendations to advance women’s healthcare. During its two-year term, the project will establish a national network of 10 sites that will engage communities in identifying women’s needs and prioritizing solutions.  Regional forums, designed to educate and collect the insights of women with Parkinson’s, will drive the project. Experts will utilize these insights to develop an action plan to change the landscape of Parkinson’s care.

“The Parkinson’s Foundation is engaging key stakeholders in Women and PD TALK to ensure that our recommendations for women’s health are not only developed, but are also implemented,” said Veronica Todaro, co-lead of Women and PD TALK, and vice president of national programs for the Parkinson’s Disease Foundation, a division of the Parkinson’s Foundation. “First, we want to understand how to improve women’s lives, and then we want to make it happen.”

Added Sharon Krischer, M.A., co-lead of Women and PD TALK and a person living with Parkinson’s: “The time has come to understand the full picture of Parkinson’s – one that takes into account the unique experiences of women. I am confident that through Women and PD TALK, by listening to the community, we can find solutions.”

Women and PD TALK is funded through a Patient-Centered Outcomes Research Institute Eugene Washington Engagement Award.

Women and PD TALK National Team

Ann Boylan, M.A.
Advocate, Parkinson's Foundation

Megan Feeney, M.P.H.
Manager, National Programs
Parkinson’s Disease Foundation, a division of the Parkinson's Foundation

Ruth Hagestuen, R.N., M.A.
Struthers Parkinson’s Center, Parkinson’s Foundation Center of Excellence

Sharon Krischer, M.A. (Co-Lead)
Advocate, Parkinson's Foundation

Rebecca Miller, Ph.D.
Advocate, Parkinson's Foundation

Clarissa Martinez-Rubio, Ph.D.
Director of Research and Centers Programs
National Parkinson Foundation, a division of the Parkinson’s Foundation

Lisa M. Shulman, M.D.
Director, University of Maryland Parkinson's and Movement Disorders Center, at the University of Maryland School of Medicine

Beth-Anne Sieber, Ph.D.
Federal Liaison, National Institute of Neurological Disorders and Stroke, National Institutes of Health

Karen Smith
Advocate, Parkinson's Foundation

Veronica Todaro, M.P.H. (Co-Lead)
Vice President, National Programs
Parkinson’s Disease Foundation, a division of the Parkinson's Foundation

Allison Willis, M.D. (Co-Lead)
University of Pennsylvania, Parkinson’s Foundation Center of Excellence

About Patient-Centered Outcomes Research Institute (PCORI)
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

About the Parkinson's Foundation 
The Parkinson's Foundation is working toward a world without Parkinson's disease. Formed by the merger of National Parkinson Foundation and the Parkinson's Disease Foundation in August 2016, the mission of the Parkinson's Foundation is to invest in promising scientific research that will end Parkinson's disease and improve the lives of people with Parkinson's and their families through improved treatments, support and the best care. For more information, visit www.parkinsonsfoundation.org or call (800) 4PD-INFO (473-4636) or (800) 457-6676.

About Parkinson's Disease
Parkinson's disease is a progressive neurological disorder that affects nearly one million people in the US and over 10 million worldwide. Parkinson's is the second most common neurodegenerative disease after Alzheimer's and is the 14th leading cause of death in the US. It is associated with a loss of motor control (e.g., shaking or tremor at rest and lack of facial expression) as well as non-motor symptoms (e.g., depression A mood disorder whose symptoms can include a persistent sad or empty mood, feelings of hopelessness or pessimism, irritability and loss of interest or pleasure in previously enjoyable activities. and anxiety A feeling of nervousness, worried thoughts and physical distress.).  Although promising research is being conducted, there is currently no cure for Parkinson's disease.

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