Today’s post is a recap of Day 3 – the final day – at the World Parkinson’s Congress meeting in Kyoto, Japan.
I will highlight some of the presentations I was able to catch and try to reflect on what was an amazing meeting.
The final day of the WPC meeting for me started with Parkinson’s advocate Heather Kennedy‘s presentation on “Your radical new life: Creative ways to overcome our challenges”. In her talk, she spoke of the mindset that is required for tackling Parkinson’s and provided some advice on what-to-do and what-not-to-do.
And Heather was speaking from personal experience. Having been diagnosed in 2012, she has become an active advocate, supporter of Davis Phinney and Michael J Fox Foundations, and an administrator on several online sites. And she regularly speaks about different methods for overcoming the challenges of Parkinson’s:
“It is not ‘why is this happening to me?’, it is ‘what is this teaching me?”
Here is a presenation she gave at the recent Parkinson’s Eve meeting in the UK earlier this year:
Key among her pieces of advice is the need to make connections:
Today’s post is a recap of Day 2 at the World Parkinson’s Congress meeting in Kyoto, Japan.
I will highlight some of the presentations I was able to catch and discuss some of my key take-aways from the day’s activities.
Early meetings meant that I arrived late to the morning session of presentations on the Day 2 (6th June) of the WPC meeting. But luckily I was in time to catch Benjamin Stecher giving his talk in the main hall.
Diagnosed at 29 years of age with young onset Parkinson’s, Ben has spent the last couple of years touring the world requesting meetings with Parkinson’s researchers, to learn more about what they do and what still needs to be done. This quest has give him a unique perspective on the state of Parkinson’s research, and has helped him in his role as an advocate.
I was looking forward to hearing him speak on the main hall stage,…
…and, like everyone else in the room, I was surprised by what he did during his talk.
Every three years the Parkinson’s community – patients, families, researchers, and clinicians – comes together to learn from each other, discuss where we are, and explore where we should be going.
The World Parkinson’s Congress (or WPC) is a very special event – rather unique in the world of conferences and scientific meetings.
The WPC meeting which is being held in Kyoto is the first one I have attended, and in today’s post, I will share what I observed on Day 0, and my impressions/thoughts of those observations.
The SoPD is at the 2019 World Parkinson’s Congress being held in Kyoto this year.
For the sake of those who are unable to be here, I will endeavour (famous last words coming up) to provide some of my impressions and observations of what is happening at the meeting on each day. We have previously discussed what the World Parkinson’s Congress is (Click here to read that post), so this post is literally just what happened each day.
And this is my first time attending the WPC, so any comments here will be coming from a novice. And I have been told by many individuals that WPC is not like other conferences.
Apparently, WPC is very special.
I have a request to make of readers.
I have been invited – with Parkinson’s advocate AC Woolnough – to conduct a round table at the upcoming 2019 World Parkinson’s Congress meeting in Kyoto. The round table is a discussion involving 10-20 people sitting around a table. Our topic will be how can we better align the efforts of researchers and patients.
And this is where we would like your help. Or at least, we would like your input.
Specifically, we are seeking topics for discussion at the table regarding how we can better join the goals/focus of the community on the research side of things.
In today’s post, we look at what the World Parkinson’s congress is, how the round table topic came about, and what we are currently thinking regarding the structure of our roundtable session.
Yasaka Pagoda and Sannen Zaka Street. Source: JT
It was the capital of Japan for more than one thousand years (from 794 to 1869).
It sits 315 miles southwest of Tokyo and 25 miles east of Osaka.
It was the setting of the world’s first novel in the world (Shikibu Murasaki’s The Tale of Genji).
It has over 1000 Buddhist temples (including the hugely impressive Fushimi-Inari-Taisha), and more than 2,000 temples and shrines collectively.
Fushimi-Inari-Taisha. Source: Medium
It has the oldest restaurant in Kyoto, Japan (called Honke Owariya, which was founded in 1465).
It had its own civil war – referred to as “Onin no Ran” (Onin War) – in the 15th century. The war lasted 11 years (1467-1477) and focused on two families of samurai warriors seeking power in Kyoto.
It is the home of the video game company Nintendo and Nightingale Floors:
It has 1.5 million residents (and 50 million tourists per year).
It consumes more bread and spends more money on coffee than any other city in Japan (I wonder why?).
It has the longest train platform in Japan (at JR Kyoto Station – 564 meters long!).
It is Kyoto.
Kinkaku-ji. Source: AWOL
And in June of this year, the World Parkinson’s congress will be held in this beautiful city.
What is the World Parkinson’s congress?
Parkinson’s is a neurodegenerative condition. This means that cells in the brain are being lost over time. Any ‘cure’ for Parkinson’s is going to require some form of cell replacement therapy – introducing new cells that can replace those that were lost.
Cell transplantation represents one approach to cell replacement therapy, and this week we learned that the Japanese regulatory authorities have given the green light for a new cell transplantation clinical trial to take place in Kyoto.
This new trial will involve cells derived from induced pluripotent stem cells (or IPS cells).
In today’s post we will discuss what induced pluripotent stem cells are, what previous research has been conducted on these cells, and what we know about the new trial.
Source: Glastone Institute
The man in the image above is Prof Shinya Yamanaka.
He’s a rockstar in the biomedical research community.
Prof Yamanaka is the director of Center for induced Pluripotent Stem Cell Research and Application (CiRA); and a professor at the Institute for Frontier Medical Sciences at Kyoto University.
But more importantly, in 2006 he published a research report that would quite literally ‘change everything’.
In that report, he demonstrated a method by which someone could take a simple skin cell (called a fibroblast), grow it in cell culture for a while, and then re-program it so that it would transform into a stem cell – a cell that is capable of becoming any kind of cell in the body.
The transformed cells were called induced pluripotent stem (IPS) cell – ‘pluripotent’ meaning capable of any fate.
It was an amazing feat that made the hypothetical idea of ‘personalised medicine’ suddenly very possible – take skin cells from anyone with a particular medical condition, turn them into whatever cell type you like, and then either test drugs on those cells or transplant them back into their body (replacing the cells that have been lost due to the medical condition).
Personalised medicine with IPS cells. Source: Bodyhacks
IPS cells are now being used all over the world, for all kinds of biomedical research. And many research groups are rushing to bring IPS cell-based therapies to the clinic in the hope of providing the long sort-after dream of personalised medicine.
This week the Parkinson’s community received word that the Pharmaceuticals and Medical Devices Agency (PMDA) – the Japanese regulatory agency that oversees clinical trials – have agreed for researchers at Kyoto University to conduct a cell transplantation trial for Parkinson’s, using dopamine neurons derived from IPS cells. And the researchers are planning to begin their study in the next month.
In today’s post we are going to discuss this exciting development, but we should probably start at the beginning with the obvious question:
What exactly is an IPS cell?