"World Domination – it’s just a small step away," joked Tom on his return from the inaugural World Parkinson Congress (WPC) in Washington 2006.  The Conference, designed to bring all aspects of the Parkinson's community together, researchers, clinicians and people living with Parkinson's (PwP), was opened by Michael J Fox, and Tom Isaacs made his debut on the international stage, discussing the side effects of Parkinson's medications in a breakfast presentation and hosting a workshop on how to use humour when dealing with Parkinson’s.  A strong friendship developed between Eli (Pollard) and Tom and it was with great excitement the following year Tom announced that WPC was coming to Glasgow in 2010. "What a great opportunity for Parkinson's," said Tom as he invited himself onto various conference steering committees! He recommended the creation of the WPC Ambassadors programme and was deeply involved in shaping the Fundamentals of Parkinson's pre-congress course for people with Parkinson’s (PwP).  WPC Glasgow 2010 was pivotal in so many ways and certainly influenced the team here at The Cure Parkinson's Trust (CPT).

Tom's vision was to ensure that as many people living with Parkinson's as possible should have access to the congress in Glasgow and he set the CPT team to work to create the Get a Move On Centre, a hub of activities led by advocates.  Here, dedicated information packs for PwP that were written and compiled by Dr. Jon Stamford (a UK neuroscientist, also living with Parkinson's), were distributed containing essential items such as a day-to-day guide of what to do at the congress and an all-important ‘glossary of terms’ that launched the glossary the WPC uses today. The glossary was initially edited by Dr. Stanley Fahn and its most recent iteration was edited by Dr. Marie Francois Chesselet.

It was at the Get A Move On Centre that a number of Parkinson's advocates forged international friendships and links. The importance and value of peer-to-peer communication was evident with advocates often seeking advice about research engagement as well as aspects of their Parkinson's to gain further understanding of their own condition.  The conference attracted over 1,000 PwP and perhaps for the first time the variety and complexity of Parkinson's and its individual nature was demonstrated.

It was as a direct result of WPC in Glasgow that three leading Parkinson's advocates Jon Stamford, Sara Riggare and Tom decided to create a resource for people with Parkinson's with content by people with Parkinson's with a focus of encouraging interest and participation in research.  Called Parkinson's Movement, the website now in its third iteration is going from strength to strength.  The site delivers its three specific aims by:

1. Enabling PwP to understand research by dispelling hype and balancing hope in breaking research news and via its webinars that are created in conjunction with the Journal of Parkinson's Disease;

2. Involving PwP in research - Parkinson's Movement's growing team of advocates (many trained via the Parkinson's Foundation's PAIRS programme) help shape research.  The site flags opportunities for individuals to get involved in research as a communicator, as a panellist, as a survey contributor, and as a participant. The site also celebrates advocate achievements on our popular 'Advocate Wall'. 

3. Encouraging contribution of insights about symptoms to inform research, and here we have partnered with MJFF's fantastic resource, Fox Insight.  This area of the site also offers peer to peer advice, much of which was filmed at WPC 2016 in Portland. 

Since 2010 Parkinson's Movement had the vision to unify voices of PwP to influence change.  As Ray Dorsey and Bas Bloem said in their recent article - The Parkinson's Pandemic - "The current and future burden of this debilitating disease depends on their action." 

At the Glasgow meeting, Tom took to the stage once again.  This time it was an impassioned plea for the research community to work together to design objective outcome measures for Parkinson's. 

“So why is Parkinson’s so difficult to measure?” he said. “The problem we face is that everyone’s Parkinson’s is different. In fact, in the 21 years I have had the condition I have never seen two people with exactly the same symptoms. The problem is compounded still further by the fact that everyone’s symptoms vary dramatically throughout the day  - what you see in front of you now could change quite dramatically in a few minutes. Believe me; I can turn from a John Travolta on amphetamines to a frozen block of ice in seconds.”

Shortly after the conference Tom and I took a call from two brilliant researchers from Tubingen in Germany, Professors Walter Maetzler and Holm Graessner.  Their enthusiasm was infectious as they explained their plan to submit a project to the EU for the FP7 funding bid to design an objective measurement approach for Parkinson's called SENSE-PARK - but importantly the project was to involve the end user from day one in terms of what could and should be measured. (SENSE-PARK will feature in another blog). 

WPC's impact has gone beyond the creation of the Parkinson’s Movement website and community of more than 12,000 people.  It was also the inspiration behind the creation of Rallying to the Challenge, the annual meeting in September for around 100 PwPs that is co-hosted with and by the Van Andel Research Institute and CPT/Parkinson's Movement and is run in parallel, but is linked to Grand Challenges in Parkinson's.  Each year the meeting takes an aspect of Parkinson's research and explores how PwP can support and influence the work in this area.  Themes have varied, from identifying the barriers to successful clinical trials which resulted in the creation of the Clinical Trials Charter; to outcome measures and the power of data.  This year's meeting will focus on non motor symptoms and will touch on describing and evaluating fatigue as well as sleep, the benefits of exercise and the psychological impact of non-motor symptoms on individuals and their partners and family. 

WPC embodies one of Tom's and CPT’s guiding principles of teamwork. He frequently used this quote in his many speeches: “During my time working in the Parkinson’s field, I have come to realise there is a patent lack of communication between scientists, clinicians and people living with Parkinson’s. There is no doubt in my mind that if we all worked together as a team, that this would  unlock the gates to a wealth of new thinking, new ideas and most importantly, pave the way to a spate of breakthrough treatments.”  

Tom understood the power and importance of researchers working with PwP, and PwP supporting clinicians and researchers. He knew that it was through teamwork that we all could raise the profile of Parkinson's and with it attract further funding to the condition to support new models of care, and urgently needed research into a cure……  The WPC was and is great fun.

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Helen Matthews is the Deputy Chief Executive Officer of The Cure Parkinson’s Trust. She was involved in the creation of the organization and worked side by side with the late co-founder of The Cure Parkinson’s Trust, Tom Isaacs, for 15 years. Helen Matthews is a member of the WPC 2019 Program Committee as part of the Clinical Subcommittee.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®