The Parkinson’s community, including our MRC PPU researchers and people with lived experience of Parkinson’s, gathered at the Royal College of Physicians in Edinburgh to recognise World Parkinson’s Day in April.
The event was organised by the four Parkinson's UK Research Interest Groups in Scotland, in partnership with the Universities of Dundee, Edinburgh, and Robert Gordon Aberdeen, as well as the NHS Scotland Neuroprogressive and Dementia Network.
Over 200 people registered to attend the event (in-person and online) to network, hear Parkinson’s research updates, discover how to get involved in shaping research, and join the panel discussion.
“It is very valuable to keep abreast of what is happening, and a privilege to hear directly from the people engaged in all of the endeavours that contribute to the Parkinson's movement.”
- Attendee feedback
Celebrating collaboration
A fast-paced selection of talks, including those from MRC PPU’s Prof Dario Alessi, Dr Francesca Tonelli, and Prof Miratul Muqit, gave a great overview of research progress from across Scotland, whilst highlighting a key theme of “collaboration over competition”.
“The quality and variety of speakers was very good and the time each was given kept the pace of the event moving. I felt I had got a huge amount out of the day.”
- Attendee feedback
Prof Dario Alessi giving an interesting research update to #Parkinsons community at “#Parkinsonsresearch in Scotland” #WorldParkinsonsDay2024 celebration event in Edinburgh pic.twitter.com/XNcNgDuB68
— Sarah (Muir) Patrick (@SarahMuir) April 23, 2024
“Focus on what you can do” & “research got to be the answer”
Powerful messages from @marcvangrieken about the impact of involvement in #Parkinsons research & benefits to all involved.
“#ParkinsonsResearch in Scotland” event celebrating #WorldParkinsonsDay2024 pic.twitter.com/RKXFxP13I5— Sarah (Muir) Patrick (@SarahMuir) April 23, 2024
Overheard someone say “fascinating!” & I agree! Brilliant talk from @miratul_neuro highlighting how mitochondrial & PINK1 research is progressing understanding of #Parkinsons at “#ParkinsonsResearch in Scotland” event in celebration of #WorldParkinsonsDay2024 pic.twitter.com/xKLlpSltnu
— Sarah (Muir) Patrick (@SarahMuir) April 23, 2024
An exciting & inspiring message of “collaboration over competition”, creativity & transparency amongst #Parkinsons researchers from Dr Tonelli @ASAP_Research at “#ParkinsonsResearch in Scotland” event in celebration of #WorldParkinsonsDay2024 pic.twitter.com/TOEuTRUe5Q
— Sarah (Muir) Patrick (@SarahMuir) April 23, 2024
“I was grateful for the opportunity to talk about Open Science and the Aligning Science Across Parkinson's initiative, something I am very passionate about. I was deeply touched by the response from the participants, their enthusiasm about the emerging "collaboration over competition" approach to the way Parkinson's research is done, and their curiosity about how this can be achieved.
I was reminded that as researchers we have a duty of shining a light on what is happening "behind the scenes" in terms of Parkinson’s research, for the benefit of people impacted by Parkinson’s, to let them know that there is a real concerted effort to find a cure.”
- Dr Francesca Tonelli, MRC PPU Senior Research Scientist & Aligning Science Across Parkinson's (ASAP) Project Manager
Marc van Grieken, member (and former Chair) of the Dundee Research Interest Group (DRIG), gave a powerful talk about his experience of Parkinson’s and involvement in Parkinson’s research, sharing a clear “research got to be the answer” message.
Marc’s focus on the importance of involving those with lived experience in research – for the benefit of all involved - further cemented the “collaboration over competition” message from the morning talks.
Identifying challenges and next steps
This theme of collaboration continued throughout the event, with the panel session moderated by John Minhinick B.E.M. and including Dr Esther Sammler of the MRC PPU and Joy Milne of the DRIG. This sparked community-wide discussions around how to overcome barriers to patient and public involvement in research, the costs of personalised medicine to the NHS, and – perhaps felt most strongly in the room – the importance of raising public consciousness and understanding of Parkinson’s.
The panel discussions motivated us all, with one attendee sharing their next steps in event feedback as “forming a pressure group to bring PD to the attention of government.”
Inspiring further Parkinson’s conversations
The event inspired many interesting conversations about Parkinson’s and Parkinson’s research and we were delighted to share our ‘Exchanges: Inspiring Parkinson’s Conversations’ art card activity with all those who attended too.
As a result, the MRC PPU has been invited to support deeper, more meaningful conversations about Parkinson’s with further Parkinson’s support groups across Scotland.
“Favourite part of day - Access to information on stands and the people manning open engagement.”
- Attendee feedback
“It was a wonderful event with representation of people living with Parkinson's disease, their friends and families as well as stellar clinical and research professionals from all across Scotland and further afar. It was a privilege working with all the other organising committee members from the Scottish Research Interest Groups and, of course, Liz Nash from Parkinson's UK to make this event happen. A huge thank you to everybody involved.”
- Dr Esther Sammler, MRC PPU Principal Investigator & Consultant Neurologist
Event videos: watch online
You can now watch the event recordings online:
Morning session: Parkinson's Research in Scotland - 23rd April 2024 (Morning).mp4
Afternoon session: Parkinson's Research in Scotland - 23rd April 2024 (Afternoon).mp4
Parkinson’s information & support
If you’d like information and support for living with Parkinson's, you can ring Parkinson's UK's free and confidential Helpline on 0808 800 0303 and their Advisers and Parkinson's Nurses will be on hand to chat, listen and signpost to further information, services, and activities. You can read more about the full range of information and support that Parkinson's UK provides on their website: www.parkinsons.org.uk/information-and-support
To receive Parkinson's UK's Research Support Network emails, visit: www.parkinsons.org.uk/research/get-involved-research
Written by:
Sarah Patrick, MRC PPU Public & Patient Involvement & Engagement Consultant
Photos provided with thanks to:
Sarah Patrick, MRC PPU Public & Patient Involvement & Engagement Consultant
Prof Miratul Muqit, MRC PPU Principal Investigator & Consultant Neurologist
Dr Esther Sammler, MRC PPU Principal Investigator & Consultant Neurologist
Marion Pirrie, Community Fundraiser (East & Highlands of Scotland), Parkinson’s UK