The Branch Get-Together on Wednesday 11th October 2023 focussed on the World Parkinson’s Congress (WPC) which took place in Barcelona in July.
Professor Tilo Kunath gave insight into some key areas from a more scientific perspective that he found most interesting, or inspiring.
One of these related to Cell Replacement Therapy (CRT) for Parkinsons. The relates to motor symptoms caused by loss of dopaminergic neurons. The loss is localised to the caudate and putamen parts of the brain. Stem cell-derived cells have been researched for some time. Tilo showed a slide from 2014 where a Japanese team planned to undertake a 2-year trial. Details of that trial are in this Article
He also talked about Gene Therapy for Movement Disorders, and was particular impressed with the work of Dr Krzysztof Bankiewicz. While the specific detail of what Tilo was delivering were not captured, we have found an article that gives some insight into this (for which Krzysztof is one of the authors).
Gene therapy trials are making use of technology, and Tilo outlined a ‘Black Box Approach’. While not something Tilo included, have had a look and found an article that outlines this.
The exciting development is that using magnetic resonance imaging-guided cannula, it is now possible to more effectively inject directly into the correct place in the brain, and this can mean an improvement in the stem cell therapy targeting. Dr Bankiewicz has been instrumental in developing a more ‘engineering’ perspective to delivering the stem cell therapy, which is outlined in this article.
The final area that impressed Tilo is the work of Professor Bastiaan Bloem, who delivered the 2016 Edinburgh Parkinson’s Lecture. In his talk at the WPC, Bastiaan talked about three environmental toxicants that appear to be fuelling the rise in Parkinson’s. Professor Ray Dorsey outlined Air Pollution, Pesticides and Trichloroethylene (TCE) as contributors. (Link to an interview with Ray in relation to this). Ray Dorsey authored a book alongside other authors including Bastian Bloem: Ending Parkinson’s Disease: A Prescription for Action. They have developed a list of suggestions, including joining PD Avengers and signing up for a Newsletter (Link).
Finally Tilo shared with us a paper: Hopamine as Personalized Medicine for Persons with Parkinson’s Disease.
As the article confirms:
“The term hopamine is a self-invented neologism representing the uniquely personal set of hopes, desires, experiences, and skills of each individual with a dopamine deficit. As such, the concept of hopamine–as a reflection of the unique personal characteristics of each person with Parkinson’s disease—really supplements that of dopamine–as a reflection of each person’s unique physical characteristics” (Noordegraaf et al, 2023).
And on that topic of Hope, our Branch Chair Stephen Brannan took to the stage to tell us his layman’s perspective of the WPC. The sheer scale and size of the congress staggered him. So many exhibitors, visitors, speakers. Some of the speakers were naturally from a medical or scientific perspective. But Stephen did manage to find some that were more suited to him as a PwP and a layperson.
He particularly enjoyed the talk from Paul Mayhew-Archer and also one from a nurse from Wales, who had a one-hour session on …. Constipation!
Stephen explained about a competition the WPC ran and how over the three days, the 12 finalists videos were shown. At one of the sessions Stephen went to, as he read his programme he heard the voice of our very own Alison Williams, who was one of the finalists! Sadly Alison was not the winner, but when Stephen showed us the winning entry, the whole room was spellbound. We very much hope that you will be too when you watch: Slim Shaky
Stephen came away from the WPC with four key lessons:
- Importance of early diagnosis
- Helping to understand what’s happening to your body
- Participation in research and clinical trials
- Sharing experiences
Due to some technology issues we were not able to show a video from our Singing for Fun Song Leader Penny Stone. She was also at the WPC, as co-lead of the WPC Choir with Judi Spencer. The preparation for the choir was done via Zoom and involved people from eight countries. So sit back and enjoy Penny outlining her experience pre and post WPC.