World Parkinson Congress 2023 took place earlier this month in Barcelona from 4 to 7 July. In this blog, Rowan Wathes, Associate Director of the Excellence Network, shares some of her key highlights and reflections from the Congress.
It is now 3 weeks since World Parkinson Congress (WPC) 2023 finished, my first international conference since joining Parkinson’s UK, and I am still buzzing with enthusiasm and ideas. The programme and exhibition hall were simultaneously dizzying and inspiring! In no particular order, here are my key highlights and takeaways:
- Our very own Director of Engagement, Dr Jonny Acheson, gave a rousing speech at the opening ceremony about Parkinson’s subtypes from the perspective of a person with the condition. His speech ended with a video showing the construction of La Sagrada Familia playing majestically in the background and a powerful message for us all: “Gaudi famously said his client wasn't in a hurry, but we are.” Watch Jonny’s talk here.
- Spending time with members of the Parkinson’s community: clinicians from the Excellence Network, people with Parkinson’s who we’d funded to attend the conference, old acquaintances and new connections. The power of WPC really is in bringing so many passionate people together under one roof (over 2,600 from 73 countries!) to share knowledge and experiences, resources, and the latest research. I loved watching the interactions between the audience and the speakers, with everyone’s contribution valued equally.
- Professor Alastair Noyce from Barts Health NHS Trust talked to us about why we are not yet ready for population-based screening for Parkinson’s. In his talk he explained that the key barriers are a lack of infrastructure, insufficient knowledge of the natural history of the condition and the lack of an agreed policy on who to treat. In better news from Alastair, and Professor Michelle Hu from Oxford University Hospitals, we are much closer to early detection and stratification. This is most tangible for older people with objective hyposmia and/or idiopathic REM sleep behaviour disorder (iRBD). There are 3 ongoing clinical iRBD neuroprotective trials, and another one that is imminent. It was also exciting to hear that Synuclein seeding assays are likely to play a very significant role as a condition marker.
- Hearing from eminent clinicians and researchers from across the world on advances in care, including:
- Dr Benzi Kluger from Rochester, Dr Ed Richfield from Bristol, and Rebecca and Larry Gifford, husband and wife from Canada behind the podcast ‘When life gives you Parkinson’s’, on rebranding palliative care to supportive care so that the principles can be incorporated into care plans from the point of diagnosis. It was also great to hear Ed share his plans for developing a specialist palliative care multidisciplinary team (MDT) using an Excellence Network project grant. Read more about the funded project here. It was also interesting to learn that research into advanced care planning found 24% of people with Parkinson’s would like to hear about life expectancy at the point of diagnosis. View the study’s full findings here.
- Professor Lynn Rochester from Newcastle and Dr Esther Cubo from Spain on the potential opportunities for providing objective care and interventions outside of the clinical environment through digital technologies.
- Hearing about some very exciting research breakthroughs, including:
- the ‘brain-first body-first hypothesis’ for subtyping Parkinson’s and what this could mean for personalised medicine (from Professor Per Borghammer from Denmark.) You can read more about the ‘brain-first body-first hypothesis’ here.
- that human stem cells offer the potential for off-the-shelf dopamine neuron transplantation products, with clinical trials underway. And that cell reprogramming offers the possibility for patient specific treatments.
- the latest results from Neurolixis, a company funded by the Parkinson’s Virtual Biotech, suggesting that NLX-112 could help treat motor symptoms as well as dyskinesias. This unexpected finding from the recent phase 2a trial gives hope that a new dual action treatment could be available in years, not decades. Read more about the NLX-112 trial results.
- Meeting with my counterparts from charities around the world to share ideas on transforming care. A particular highlight was meeting Nicole Yarab and Lisa Hoffman from the Parkinson’s Foundation. Nicole is the Vice President for Clinical Affairs and Information and Services, and was extremely engaging and open. And Lisa, the Director of Education, is a force of nature and more akin to a Netflix producer than a traditional charity director (I loved her motto: first and foremost, education must be entertaining!) I am excited about developing a closer relationship between the Excellence Network and the Parkinson’s Foundation over the coming months.
- Getting inspired about exercise after watching Neil Russell, a truly inspirational man, arrive at the conference having run 1,477km from the UK to Barcelona! And after joining an action-packed exercise session themed around Wimbledon, run by the fabulous Neuro Heroes (previous 2021 Excellence Network Award winners and active members of the Excellence Network Exercise Hub).
- Watching the winning entries of the video competition, in particular the ‘Slim Shaky’ hip hop video, Eli Schwarzschild’s Parky Raccoon song, and the amazing video from Tomas Gisby, a talented saxophone player, who accompanied his own performance on 5 other instruments! Watch the video of Tomas playing on his twitter page. On that note, I’m delighted to share that Tomas will be playing at our 2023 Excellence Network Awards Ceremony in November.
- Realising that we’re doing a pretty good job in the UK. Yes, the waiting lists are terrible in some areas. And there is significant variation in access to multidisciplinary care. And a large proportion of the NHS workforce is tired and burnt out. But, we have the best coverage of Parkinson’s nurses in the world and amazing research happening right on our doorstep. And a thriving technology industry, with new apps and devices for people with Parkinson’s being developed all the time. I am excited about building on these foundations so that more people with Parkinson’s have access to best practice person centred care. We have a lot to do but I have no doubt that with the help of everyone involved in the Excellence Network, we will have made significant progress by the time WPC comes round again!