During the last week of September, the Van Andel institute and the Cure Parkinson’s Trust held their annual Parkinson’s research meetings in Grand Rapids, Michigan.
The meetings – the Linked Clinical Trials meeting, Grand Challenges in Parkinson’s, and Rallying to the Challenge – provided an opportunity for members of the Parkinson’s community (both researchers and advocates) to come together, share research/knowledge/experience, and discuss what needs to be done.
I attended the meetings this year for the first time.
In today’s post, I thought I would provide some feedback and share some of my thoughts on the meetings.
Jay Van Andel (left) and Rich DeVos. Source: Amwayconnections
The history of Amway is an interesting story.
One of ambition, determination, and a refusal to give up.
It begins with the two founders – Jay Van Andel and Rich DeVos – trying and failing to get seven different businesses off the ground before they eventually founded the multi-level marketing company that we know of as Amway.
One aspect of the story that many people do not know, however, is that for a decade before he passed away in 2004, Jay Van Andel lived with Parkinson’s.
It was a private battle, but (again) one in which Mr Van Andel demonstrated a refusal to give up. And as part of that determination, in 1996, Van Andel and his wife Betty founded the “Van Andel Institute” in Grand Rapids, Michigan – the city where Jay was born.
The institute has over 300 researchers investigating three core areas of research: cancer, epigenetics and neurodegeneration (of which Parkinson’s is a major focus).
The Van Andel Institute. Source: VAI
The Neurodegenerative research in the Van Andel Institute is led by Prof Patrik Brundin, who is a world-leading researcher in the Parkinson’s field. He has more than 30 years of experience (and over 350 research articles) investigating Parkinson’s pathology and experimental therapeutic approaches for the condition.
Prof Patrik Brundin. Source: Mlive
In 2014, the Cure Parkinson’s Trust and the Van Andel Institute partnered on an initiative to identify new treatments for Parkinson’s. That collaboration was called the Linked Clinical Trials (LCT) initiative.
It is aimed to re-purposing medications. Taking treatments – which have previously been clinically approved to treat other diseases AND also shown promise in slowing or reversing Parkinson’s in preclinical laboratory experiments – and applying them to clinical testing in Parkinson’s.
Prof Brundin & Tom Isaacs of CPT. Source: CPT
The LCT meeting occurs in September each year, and it is held immediately before the ‘Grand Challenges in Parkinson’s‘ meeting and ‘Rallying to the Challenge‘ meeting.
The Grand Challenges in Parkinson’s symposium brings together people with Parkinson’s and leaders in Parkinson’s research from around the world to discuss specific topics. This year, the theme of the meeting was ‘non-motor symptoms of PD’. The topics discussed at the meeting included loss of sense of smell, trouble sleeping, gastrointestinal issues and cognitive impairment, all of which greatly affect the quality of life for people with the PD.
Running in parallel with this symposium is ‘Rallying to the Challenge’. This additional meeting is designed for and run by people living with Parkinson’s. ‘Rallying’ (as it is affectionately known) has one simple aim: to involve people living with Parkinson’s in research.
It attempts to identify methods and creates practical tools to support the research effort, through the discussion of ideas and experience.
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1. Travelling with Parkinson’s is not easy
I travelled to the meeting (from the UK) with a number of people with Parkinson’s, and the experience was eye-opening, for two reasons.
Firstly, travel is an exhausting process, but it is made doubly hard for individuals dealing with a debilitating condition like Parkinson’s. Having spent considerable time in the clinic and at local support groups with folks living with the condition, I naively thought I had a pretty good handle on certain aspects of the ‘lived experience’. The flights to and from Grand Rapids completely disabused me of that ridiculous notion, and I now have a profound respect for those members of the community who are travelling on a regular basis as part of their efforts to raise awareness and engagement.
The second reason it was an eye-opening experience was because I was exposed to the services provided by some of the airlines/airports. A friendly, supportive face (who knows the airport) at each end of a long international plane ride goes a long way and it does not seem like too much to ask for. Some of the airport services were absolutely stellar, while others… mmm, not so much. But the services were there in most cases and they made the process a lot easier. So, if you are planning to come to the meeting next year (or to the World Parkinson’s Congress in Kyoto in June, 2019), make full use of those services.
2. The patient voice
One of the strong themes that came through during the meetings was the growing presence of the ‘patient voice’.
In the LCT meeting, it was particularly refreshing and encouraging to see the panel of experts (who had gathered to assess the drugs to be prioritised for clinical testing) turning and asking the patients in the room what they thought. There was an active and constructive dialogue, which past attendees suggested had not been present in previous meetings.
And this was not just a token gesture of politeness from the panel of experts. There was an acknowledgement not only of the ‘lived experience’ of the affected community, but also a desire to consider the thoughts and advice of patient advocates who had specific skill sets (such as a clinical trial expert, physicians, biotech experts,…). The wealth of expertise in the room was being used to its fullest extent all for the good of the cause.
And this over-flowed into the Grand Challenges and Rallying meetings.
Even between lecture sessions, folks with Parkinson’s were actively engaged with researchers at their poster presentations asking questions and sharing their thoughts/experience. And during the lunch breaks, there were very involved discussion being had about the research. It was an inspiring thing to observe and all I could think was that this should be encouraged further (and not just within the Parkinson’s community, but for research in all medical conditions).
3. The Prodromal phase
The second major theme in the air at the meetings was the sense that we are approaching a moment where we will have a good idea of how to identify individuals in the prodromal phase of Parkinson’s.
The prodromal phase is the period of time before diagnosis. It is a window during which neurodegeneration (the loss of cells in the brain) is taking place, but not enough dopamine neurons have been lost for the motor features of Parkinson’s to be apparent. It is only towards the end of the prodromal phase that the first signs of the motor symptoms start to appear (which leads to the diagnosis).
Researchers are starting to define specific characteristics of this prodromal phase that will allow us to identify people who have a higher risk of developing Parkinson’s. This represents a major shift in the battle against Parkinson’s. The ability to identify those at high risk of Parkinson’s would allow us to potentially start treating these individuals before they actually reach the point of diagnosis.
Having just sat through the LCT meeting – where the topic of discussion was how to help the current diagnosed community – the shift in mindset was quite startling. And there are already some ideas being discussed as to how one might approach that early treatment process. We will be exploring this idea of ‘pre-diagnosis treatment’ further in future SoPD posts.
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Another important (and very pleasant) aspect of the meeting was the opportunity to meet and talk with a lot of Parkinson’s advocates.
These included Ben Stecher:
Born in Kenya now living out of Canada, Ben is very active advocate for Parkinson’s. Diagnosed with the condition at age 29, Ben has been travelling the world interviewing experts in the Parkinson’s research field – you can follow those adventures on his website Tomorrow Edition (tmrwedition.com). He is also a co-founder of the Parkinson’s Research Advocacy Group (prag.site), a patient adviser and blogger for the World Parkinson’s Congress, and a regular blogger for the Journal of Parkinson’s. It was good to catch up with him at Grand Rapids.
It was also a real pleasure to talk with another Canadian, Dr Soania Mathur. Diagnosed at age 27, Dr Mathur is a passionate advocate for PD research, who also encourages the need to optimize quality of life with a chronic condition like Parkinson’s. You can find out more about her at her website ‘Designing a cure‘, and if you haven’t watched her “10 lessons I’ve learned living with Parkinson’s” video (below), you really should:
The Grand Rapids meetings also provided the opportunity to finally sit and chat with Dr Jon Stanford – Parkinson’s advocate, gentleman neuro-scientist, and international man of mystery:
Jon has a rather unique perspective on the whole situation: after being involved in academic research investigating the neurochemistry of Parkinson’s for 23 years, he was diagnosed with the condition in 2006 at age 49. He spoke of his fascination of the early symptoms (‘so this is what Parkinson’s actually feels like’), which quickly gave way to other feelings about the condition. He is a wealth of knowledge (science and otherwise), and he maintains a great website – Click here to see it.
I also had a chance to talk with Gary Rafaloff and Sue Buff – who maintain the Potential Disease-Modifying Therapies in the Parkinson’s Disease Clinical Trial Pipeline – an amazingly useful resource outlining all of the on-going clinical trials for Parkinson’s.
In addition, it was a pleasure to meet and talk with other attendees Richard W, Daniel (thanks for the book), Glenn, Jillian, Steve (DW), Mark P, and everyone else.
Overall, it was one of the best set of meetings I have been to in a long time – mainly due to that patient voice aspect I mentioned above. Most research conferences are stale affairs, filled with paranoid researchers worrying that they will be scooped on publishing their particular findings. The Linked Clinical Trials, Grand Challenges in Parkinson’s, and Rallying to the Challenge meetings, however, felt rather unique and refreshing (special thanks to Prof Brundin, Helen, & the organisers, especially Kim!).
It was all so good – I am already looking forward to going again next year.
And I’ll leave you with this great video ‘taster/summary’ of the meetings from Brian Toronyi – President of the Parkinson’s Association of West Michigan and co-founder of FATE (Fun Again Toys for Everyone):
FULL DISCLOSURE: The author of this blog is now an employee of the Cure Parkinson’s Trust which is a partner in the LCT/Grand Challenges/Rallying meetings. Neither the Van Andel Institute nor the Cure Parkinson’s Trust requested the production of this post or were not contacted regarding it. This post has been provided solely by the author as he was simply rather impressed by the meetings and some of the themes that were coming through. And he thought that readers may be interested. All thoughts and opinions expressed here are those of the author and may not reflect those of the Van Andel Institute or the Cure Parkinson’s Trust.
The banner for today’s post was sourced from experiencegr
8 thoughts on “Grand times in Grand Rapids”
A really encouraging piece about the meetings. Nice to hear about really useful meetings where patient involvement is to the fore. Keith
It was a really positive experience for yours truly and many others in attendance.
I am participating in a clinical trial that hopefully will prove disease modifying. My identification and participation in the trial is a direct result of the fantastic work that Gary and Sue have done.
Many thanks to them for their great work!
Gary & Sue are unsung heroes in this fight! If only we could clone them, it would be an easier battle.
So many familiar and wonderfully engaged people working together; this is what we all need! I applaud y’all! Lisa
Thanks for your kind words Lisa. They are all very engaged individuals.