On 8 March, we celebrate International Women’s Day by shining a light on the work of female researchers and scientists who have made significant contributions to the Parkinson’s community, and the impact of their work in advancing our understanding of the role of sex and hormones within the condition.

Parkinson’s affects 153,000 people in the UK – 48% are women. What therefore contributes to this lower incidence of Parkinson’s in women? In what ways does the condition present differently in women, and are there variations in the needs of women compared to men?

The publication titled ‘Unmet needs of women living with Parkinson’s: Gaps and controversies’ took a large step forward in addressing these issues. Furthermore, the paper served as a pioneering example of collaboration between researchers and the Parkinson’s community. Notably, three out of the six authors, all women, who contributed to the work have Parkinson’s themselves; their collaboration amplifies voices and advocates for changes in both care and research within the Parkinson’s community.

More recently, one of the authors, Richelle Flanagan – who was diagnosed with Young-Onset Parkinson’s following the birth of her daughter – has joined forces with researchers at University College Cork (UCC) to understand how hormonal changes in women impact their symptoms.

Based on her own experience, and those of other women, she has developed My Moves Matter, a digital health app to track women’s symptoms across their menstrual cycle.

Richelle believes that specific treatment for Parkinson’s symptoms in women is an area that has been long overlooked by the medical community; she is now working with a team from UCC’s Department of Anatomy and Neuroscience on a ground-breaking study.

The study, supported by the Health Innovation Hub Ireland (HiHi) and Enterprise Ireland, seeks the help of women with Parkinson’s, who are being asked to track their symptoms using the My Moves Matter app. The research will be the first in the world to track how hormonal changes in women with Parkinson’s impacts their symptoms, and it is hoped that their findings will aid patient-specific treatment and management of Parkinson’s.

My Moves Matter website

Led by Richelle Flanagan, My Moves Matter gives you the power to remember your medication, see your day-to-day patterns, track your hormonal fluctuations, make positive changes and gain valuable insights.

Find out more here
Fox Insight

No one understands Parkinson’s better than those living with it every day. By working together with Fox Insight, people with Parkinson’s can shape the future of research. Fox Insight easily collects self-reported data about health experiences. Join participants around the world helping to power Parkinson’s research.

Find out more and register here
Women with Parkinson’s webinar

Since the publication of the paper “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies” in Jan 2022, there has been a move towards more sex and gender based research in PD. This webinar focuses on research and a possible cure through a sex and gender lens.

Recorded to watch again
Women’s Parkinson’s Project

Started by a group of women with Parkinson’s, this project aims to raise women’s voices for better treatment and research in Parkinson’s.

Find out more and register
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It is so encouraging to see the number of data collection and analyses efforts now underway, with so many of these being driven, designed and written by and for women with Parkinson’s, from Fox Insight’s dedicated surveys, to the My Moves Matters app and the Women and Parkinson’s Project analysing the impact of hormonal phases and pregnancy on Parkinson’s. Now we need to ensure that every study includes proactive sex specific analysis plans to ensure we don’t miss any vital research clues.

Helen Matthews, CEO Cure Parkinson’s

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