A Parkinson’s nurse, physiotherapist and Deep Brain Stimulation patient are among those who have joined together to form Parkinson’s Europe’s new Empowerment Steering Group.
The second of three new steering groups has been set up to guide and support the empowerment pillar of the European charity’s new strategy.
The work aims to build knowledge, understanding and capacity of national associations and groups. It intends to connect Parkinson’s communities with both each other and other bodies such as the treatment industry. It also hopes to boost communication and understanding between people affected by Parkinson’s and healthcare professionals.
The new Steering Group held its first bimonthly meeting in May, overseen by the Outreach and Engagement Manager Jessie Duncan and the Strategic Director Amelia Hursey.
“We are very excited to see the enthusiasm, passion and skill that our members in the Empowerment Steering Group collectively have,” says Amelia. “With their help, we will make sure all of our activities that fall under our empowerment pillar will be focused, relevant and fit for purpose for our whole community.”
Meet Parkinson’s Europe’s Empowerment Steering Group members:
Ellen Causin is a French-Australian physiotherapist with experience of living and working in Australia, the UK, and France
“I am passionate about empowering people with Parkinson’s, as well as the health professionals who support them, through knowledge sharing. I believe this empowerment group will be a fantastic way to help achieve that goal.”
Friedhelm Chmell has many years of experience in Parkinson’s care, and now works as a Parkinson’s Nurse
“I believe that after more than 22 years in the care and counselling of people with Parkinson’s, I can contribute to strengthening the Parkinson’s community in this way. And at the same time, I am always interested in learning from others.”
Janette Sinclair is British, and lives in Brussels, Belgium. She has had Parkinson’s since 2013 and had Deep Brain Stimulation surgery in January 2025
“I am interested in bringing together and helping people with Parkinson’s to take control of their lives. From the outset after my diagnosis, I have been an advocate of intensive sports and physical activity for people with Parkinson’s.
“I have been involved in developing this at a local level through Action Parkinson, a Brussels-based activity centre for people with Parkinson’s. I am currently a board member of Action Parkinson’s and of Parkinson’s Europe.”
Jagoda Machajek works at the Brain Disease Foundation
She is responsible for communication, creating and coordinating projects, and sharing her personal experience with patients who reach out for information.
“I want to share my experience primarily from the perspective of a caregiver for my mother – the founder of The Brain Disease Foundation in Poland.”
Marco Ramelli lives in Florence, Italy, and was diagnosed with Parkinson’s 13 years ago
“We must spend our time better, making sure life includes important things like diet, good habits and doing what you love to do. We need research. Research could give us new weapons, new possibilities, new lifestyles.”
Matthew May is a chemist-turned-medicines-developer and lives in Switzerland
He works for pharmaceutical company Roche but has previously worked at non-profit organisations.
“I love working at the interface of where science meets people. Since finding out as a child that my grandfather had Parkinson’s, I have wanted answers and solutions. I then worked at DIA and the European Patients Forum, and I helped set up the European Patients Academy which helped others learn about medicines development. This is something I am passionate about continuing, even if I now have another job.”
Peter DiBiaso is a Parkinson’s advocate and life sciences professional, committed to finding a cure for Parkinson’s
“I was diagnosed with early onset Parkinson’s nearly 10 years ago, and I am particularly committed to promoting awareness and participation in clinical research trials. I am most interested in the ability to build bridges across our patient advocacy communities, whilst enabling global support through continued engagement and collaboration.”
ZWAP Co-Founder Rune Vethe lives in Sandefjord, Norway, and was diagnosed with young-onset Parkinson’s 16 years ago
“I enjoy being part of both the local, national and international Parkinson’s community. I believe in the importance of a European umbrella organisation and would like to be involved and try to contribute.”
Lucia Power lives in Ireland and has worked in the health and social care sector for 29 years.
“I have played a key leadership role in the development of disability and neuro rehabilitation services in Ireland both at service and funded level. I currently have a management role in the regulation of social care services.
“As a person with Early onset Parkinson’s, I have never let the condition define who I am, I believe in putting the ‘person’ first and that any intervention is about supporting the person and their uniqueness.”
Read more about Parkinson’s Europe’s 2025-2028 strategy
