First Catch Your Researcher and Mix With Entrepreneurial Spirit: WPC 2010 Continues to Inspire Science and Collaboration in Edinburgh
I never get tired of hearing people talk about being at the WPC 2010 in Glasgow. They call it a life-changing experience. They realised that WPC’s unique mix of researchers, healthcare professionals and PwP and carers gave – and continues to give – huge scope to our local PwP to contribute significantly, and on our own terms, to PD research. I can hear the passion in their voices when they talk about having been there.
Folks left the conference with two big questions: How do we share what we’ve learned with the rest of the local PD community? And: How do we keep the enthusiasm, passion and impetus going? In answer to the first question, the Edinburgh Branch of Parkinson’s UK ran a symposium three months later, and the enthusiasm was such that, in answer to the second question, the Branch decided to form an Edinburgh Research Interest Group.
ERIG was born.
Its aims were, firstly, to provide opportunities for members with an interest in Parkinson's research to meet, communicate, work together and generally further the cause of research; and secondly, to encourage and develop all members’ interest in research. The recipe was very simple: to paraphrase Mrs Beeton: “First catch your researcher” (in our case Dr Tilo Kunath, at that time a Parkinson's UK Senior Research Fellow, who provided a venue for the meeting in his laboratory in the Institute for Stem Cell Research (now the Centre for Regenerative Medicine) at the University of Edinburgh), mix with a generous dash of entrepreneurial thinking, a liberal sprinkling of seizing the moment, and much hard work (spearheaded by the inspirational late Professor Ken Bowler and the indefatigable Patrick Mark, then Chair of the Edinburgh Branch).
The Edinburgh Parkinson's Lectures grew out of the 2011 ERIG action plan. The Group invited Professor Roger Barker, who had given an inspiring talk at the Glasgow Congress, to deliver a public lecture in Edinburgh with the explicit purpose of increasing public awareness in the stem cell and genetic fields. Building joint sponsorship (prompted by Dr Kunath) with the Centre for Regenerative Medicine was made possible when Professor Barker agreed to give a seminar for professional researchers at this centre, in addition to the public lecture. ERIG, and the Lecture itself, echoed the WPC principles of building a close relationship among patients, carers, members of the public, healthcare professionals and the research community.
When I arrived in Edinburgh in 2015, diagnosed three years previously, the impact of the WPC 2010 continued to reverberate, the seed that had been planted was continuing to grow. ERIG educates me about Parkinson’s, and about the research that is seeking its cause, and how to stop, slow down, reverse, even cure it. ERIG creates a bridge between PwP and the research community, and I have seen a researcher cry when told how much her research means to PwP, and heard another say “I never realised just how important my work was.” ERIG also, as does the WPC, reminds me that my own wellness is my own responsibility, and that one important key to that is involvement.
I’ve now been to two World Parkinson Congress, the WPC 2016 in Portland, Oregon and WPC 2019 in Kyoto, and jointly given seminars on my return to share the learning gathered from the leading-edge research profiled there.
There are now Research Interest Groups in Dundee, in Aberdeen, and all across the UK. There have been the Edinburgh Lectures every year since, delivered by an outstanding range of internationally acclaimed speakers, and the pandemic hasn’t affected either the Lectures or ERIG meetings, simply shifting them online, and so giving the opportunity to reach out to even more people. And now we’ve come full circle with the 10th anniversary Lecture to be delivered one again by Professor Roger Barker, who delivered the first lecture and who now happens to be the Vice President of the World Parkinson Coalition.
ERIG, now ably led by Professor David Melton, and supported by Dr Tilo Kunath’s enthusiasm throughout its eleven years, continues to flourish with recent activities such as an online engagement event with PhD students who will become future Parkinson’s research leaders, and its assistance to a local Parkinson’s researcher and a clinician to win funding for an important clinical trial.
The seed planted in Glasgow in 2010 has grown into an amazing tree, with branches extending across the Scottish PD community and far beyond. The tree is rooted in the principle that by mixing researchers, healthcare professionals and PwP together, by facilitating listening to each other with care and respect, we can move ever closer to the day when we can, in words of Professor Bastiaan Bloem, our 2016 Lecturer, “end Parkinson’s.”
The next Edinburgh Parkinson’s Lecture is on Thursday 7th October 2021 at 7PM BST/ 2PM ET. Registration is free and Professor Barker’s talk can be viewed at: https://www.edinburghparkinsons.org/edinburgh-parkinsons-lecture/
Dr Alison Williams, Honorary Professor, Centre for Person-Centred Practice Research, Queen Margaret University Edinburgh, She presented a poster at the 5th World Parkinson Congress in Kyoto and welcomes discussions, you can can contact her at alisonwilliams62@googlemail.com.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®