It's now been 3 weeks since we attended the World Parkinson's Congress 2023 in Barcelona. Firstly, let's acknowledge that WPC is THE global Parkinson's event to attend. It's an international stage that unites all corners of the community, including researchers, clinicians, PwP and their carers. We were thrilled at the opportunity to exhibit our devices and scientific research there.
And with that, here were our thoughts:
The range of knowledge and experiences at the WPC was truly incredible and inspiring. Researchers and clinicians definitely put their best foot forward, showing compassion, empathy and humility (Bas Bloem and so many others). And so many amazing PwP too.
It was great to see that academic sessions focused on non-motor symptoms, early detection, Gut-Brain-Axis, nutrition, exercise and rehab benefits, counselling and anxiety management feature in a much more meaningful way. But it was disappointing that we seem as far away from the all-elusive cure as ever. At least promising new research streams are opening up (AKA mitochondrial and lysosomal deficiencies; inflammation; gene therapeutics and lipid metabolism).
It was also gratifying for SYMBYX that Parkinson’s is no longer considered only a brain disease (great research and presentation by Per Borghammer). Louise Ebenezer, also, held a brilliant roundtable discussion, where she explained that Parkinson’s constipation is due, in large part, to direct damage to gut dopamine cells in an area known as myenteric plexus.
Other comments: We felt there was an insufficient discussion of the risks associated with DBS. And only a handful of innovative, med-tech companies (including SYMBYX, yes, we are biased) were offering technologies for symptom management. This speaks volumes about the current state of how we treat Parkinson's. PwP need more support and a wide variety ways to live more fully with PD. Also sadly, weak support from governments seems to be a global phenomenon within the PD community. We learnt that low awareness levels, or more importantly the stigma of having PD, is literally life threatening in many parts of the developing world. Thank you so much to Parkinson's Africa and Natasha Fothergill-Misbah for opening our eyes with great discussion panels and such a powerful documentary.
In addition there was great discussion on: Prodromal symptoms (i.e., typically non-motor and appearing say up to 10 yrs before a diagnosis) such as progressive constipation, anosmia (loss of smell), blood pressure dysregulation and heightened anxiety/depressive feelings are highly predictive of a future diagnosis. Then why the heck are we all still waiting for a formal diagnosis before taking action - that is, once +70% or more of the brain’s dopamine cells are dead?! Early detection via stool or gut analysis could be KEY to actually slowing or curing this disease.
Whilst the vast bulk of the social media reports since the World Parkinson's Congress (#WPC2023) has been exceptionally positive, we are shocked that Parkinson’s has not yet been declared a global public emergency. It’s now the fastest growing neurological disease in the world - growing way faster than all others on a population age-adjusted basis - meaning it’s partly or mostly a man-made (sorry ladies ) disease!
Lastly, but really importantly to us foodies/coffee addicts, could we please have coffee available in the morning too, and more fresh water all day next time! Many delegates we met were thoroughly dehydrated in the July Barcelona heat. Everyone needed many more chairs to sit on, and the few chairs available weren't adequately comfortable for PwP. These are, of course, minor details, in what was truly a remarkable conference, but it is critical that we continue to attract the attendees with Parkinson's to this event. Their inclusion and involvement is what makes the WPC so very special after all.
Whilst we aren’t nearly satisfied with the current global recognition of the benefits of light therapy (which means plenty more work to be done!), we are now definitely part of the PD community and global discussion.
On a very positive note, some very exciting research collaborations are likely to eventuate from new relationships and connections we made at the Barcelona conference, and we will be guest-featured on several additional social media platforms over the next couple of months as more and more people learn about the fantastic research results underpinning SYMBYX therapies and devices.
Huge thank you to all those who attended, participated and/or work hard in the PD Community every day.. We left inspired and energised and very grateful for all our new friends, followers and supporters.