People with Parkinson’s and experts from across Europe are coming together to form Parkinson’s Europe’s new Visibility and Awareness Steering Group.
The group has been established to guide and support Parkinson’s Europe’s strategy, focusing on its third strategic pillar.
The group will hold its second bi-monthly meeting this month. The work is being co-ordinated by Parkinson’s Europe’s Director of Communications Laura Vickers-Green, Strategic Director Amelia Hursey and Head of Content Christy McGhee.
Raising the profile of Parkinson’s as the fastest-growing neurological disorder will be one of the key strategic aims the group will support.
It will also seek to guide Parkinson’s Europe’s work to increase awareness and understanding of the real life impact of Parkinson’s.
Meet Parkinson’s Europe’s new Visibility and Awareness Steering Group members:
Cathy Molohan is an Irishwoman living in Frankfurt, Germany. She is mum to two (almost) grown up kids, and a passionate patient advocate.
“I am living a great life despite Parkinson’s and doing everything in my power to keep it that way. Together we are strong, and loud, and powerful.”
Retired college tutor David Sangster is British, and was diagnosed with Parkinson’s in 2011, at just 29 years old.
“Statistically speaking, I was too young to be diagnosed with Parkinson’s back then. Now, in my early forties, I am still too young. I have been through so much with this condition. It doesn’t get any easier, that’s for certain. But you can still find living space within its diminishing parameters – if you have a positive mindset. But some days Parkinson’s wins. It completely violates every part of me. I lose control. To be honest, nothing can prevent the complex aspects of this multi-faceted condition showing itself at the most inconvenient times. This is real. All I want to do is to be me. Be still and to contribute to society the best I can.
“There is still so much to be done to raise awareness of Parkinson’s, to educate society and medical professionals. About the range of symptoms that we face on a daily basis and come to increasingly manifest over the course of the condition. How does Parkinson’s really feel? And what does it actually look like? How does it limit me, and the many others around the world, physically, mentally and emotionally?”
Emma O’Shea is a researcher and lecturer at the Centre for Gerontology and Rehabilitation at University College Cork, in the South of Ireland.
“I am passionate about creating impact with research findings, and am currently the Chair of the ‘Research and Impact’ subcommittee of Parkinson’s Ireland. Our research group has led a national programme of research over the past five years. This has shown that the symptoms and experiences of Parkinson’s are not always well understood by society. This has knock-on effects, including stigma and under-provision of specialist services and support for people and families living with Parkinson’s.”
Lisa Wynne is a Parkinson’s nurse specialist with over ten years of Parkinson’s experience, having trained in adult and pediatric nursing prior to this.
“I currently work with the Irish national charity, based in Dublin, supporting people living with Parkinson’s and their families. I am very interested in this steering group to help raise awareness on a European level, spreading the same message and working together for greater impact.”
Paqui Ruiz was born and lives in Tenerife, Canary Islands.
“I am a Spanish woman with early-onset Parkinson’s for more than twelve years, married and with four children. After six years of struggling to maintain my creative and positive identity, I decided to publish a blog “Con P de Párkinson”. A space where Spanish-speaking women with Parkinson’s can find support and visibility.
“My diagnosis came after a long process of medical confusion. Today, thanks to the people who have supported me, I have found true friends. I continue to value each day as an opportunity to live fully and share my experience with others.
“I am an activist and ambassador for the Degén Foundation. Thanks to the WPC I discovered that activism goes beyond my street, my province and my country. Parkinson’s is not only a health problem, it also involves society and the policies of countries and the European Union.
Pawel Kaczmarek is from Poznań, Poland, and has been living with the challenges of advanced Young Onset Parkinson’s for over a decade.
“While I work supporting researchers professionally, my personal drive is focused on turning my own experiences into opportunities for connection and innovation within the Parkinson’s community.
“I am eager to join forces with fellow enthusiasts to challenge perceptions, improve awareness, and help give Parkinson’s a stronger voice. Especially focusing on how to leverage technology and AI to empower people with Parkinson’s to stay at or return to work. Not only as a means of preventive therapy, but also as a way to bring value to their loved ones, societies and economies.”
Pedro Maria is based in Lisbon, Portugal, and works for Portuguese pharmaceutical company BIAL. He is also father to a seven-year-old daughter, and has more than 20 years of experience in the pharmaceutical industry.
“Since 2021, I have been working in the Parkinson’s space at BIAL as a Senior Global Marketing Manager. My focus is on delivering effective solutions that empower people with Parkinson’s to self-manage their OFF episodes.
“I strongly believe that European people with Parkinson’s deserve a stronger voice to ensure better access to Parkinson’s education, support, and treatment.”
Wendy Van Wijk lives in the Netherlands and was diagnosed with Parkinson’s in 2017 at the age of 47.
“Despite everything, I maintain a positive outlook on life. Through my magazine, Wendy’s Parkinson Journey, I aim to inspire others. Not only by sharing my own story but also by highlighting the powerful and hopeful stories of fellow patients.
“Working together, we can expand our reach, strengthen our voice, and stand as one united community to make a difference.”
Antonella Macerollo, Consultant Neurologist at the Walton Centre in Liverpool, UK, and Honorary associate professor at University of Liverpool.
“I have worked in the field of movement disorders and especially Parkinson’s since 2007, when I was in medical school. I am passionate about working with charities dedicated to people living with neurological conditions. They are the real voice, and I would like to contribute to make ‘louder’ this voice.
“I am trustee of the Dystonia UK and Regional Lead of the Parkinson’s Excellence Network of the North West Region in the UK. I am delighted to join this group because I feel the need to contribute in increasing visibility and awareness of this condition in Europe. Especially in relation to non-motor symptoms and neuromodulation therapies.”
Meet our new Empowerment Steering Group, and Data and Innovation Steering Group.
