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Parkinson's Foundation Hosts National Forum for Women Living with Parkinson's Disease

MIAMI & NEW YORK — NOVEMBER 7, 2018 —The Parkinson’s Foundation hosted the first national forum for women with Parkinson’s disease (PD) on October 19 at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, in Houston, TX. The Foundation brought together more than 50 women from across the country to develop a patient-centered “Women and PD” research agenda that will include recommendations on how to improve the health of women living with Parkinson’s.

“The Parkinson’s Foundation has created the first research-oriented program for women living with PD that also provides a feeling of empowerment," said Veronica Todaro, executive vice president of the Parkinson’s Foundation. “Through this project, we are ensuring that our recommendations for women’s health are not only developed fully but are also implemented as well. This program provided us with a better understanding of how to improve the lives of women living with this disease, which is one of the goals the Foundation strives for.”

Women with Parkinson’s experience disparities in care and treatment when compared to men.

Over the last two years, the Parkinson’s Foundation has hosted 10 information-gathering sessions in different cities for women living with Parkinson’s, movement disorder specialists and healthcare professionals, aimed at identifying and recommending priorities in research and care. The Women and Parkinson's Teams to Advance Learning and Knowledge (Women and PD TALK) program was funded through a Patient-Centered Outcomes Research Institute (PCORI) award.

In January 2019, the Foundation will publish the first-ever patient-centered Women and PD research agenda and action plan. It will utilize the insights gained from the forums to ensure better outcomes and improve the standard of care for women with Parkinson’s, while also implementing change in the way Parkinson’s is treated and studied in women.

Women and PD TALK forum participants have already identified key issues they hope future research and care will address.

They would like to:

  • Better understand the role hormones play on the development and severity of PD.
  • Address PD symptoms that women consider embarrassing and prevent them from staying involved in social activities.
  • Target and address cultural norms that do not prioritize women with PD.

When compared to care partners and health professionals, women with Parkinson’s were more likely to discuss issues like impact on identity and personality, medication side effects and poor communication with providers at diagnosis.

“There are differences in the way women with Parkinson’s react to medications and our treatment. Through the Women and PD TALK we have listened to the community and now look forward to developing a research goal based on these findings, while also moving forward with the local educational component,” said Sharon Krischer, MA, co-lead of Women and PD TALK and a person living with Parkinson’s.

The Foundation has also unveiled a local, educational version of the program that will be hosted throughout the country to reach and empower more women with Parkinson’s to better advocate for their care.

“The Parkinson’s Foundation Heartland Chapter is thrilled to bring the Women and PD program to our Parkinson’s community,” said Jane Ann Gorsky, executive director at the Parkinson’s Foundation Heartland Chapter. “We recognize how important it is for women to understand the unique ways Parkinson’s affects their lives and to encourage them to access resources for living better with PD.”

Women and PD events are free and open to the public. The Parkinson’s Foundation invites women with Parkinson’s, caregivers, family, friends and anyone interested in learning more about Parkinson’s to attend. To find a local Women and PD event, please visit Parkinson.org/Events or call 1-800-4PD-INFO. To learn more about the Parkinson’s Foundation Women & PD TALK program, visit Parkinson.org/WomenAndPD.

 

About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit www.parkinson.org or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive 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 and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.

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Wednesday, November 7, 2018
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