World Parkinson Congress 2016
World Parkinson Congress (WPC), the only Parkinson’s conference to draw together people with Parkinson’s, researchers and clinical experts took place in Portland, Oregon, USA from 20th to 23rd September 2016. We have just got back from a very busy and interesting trip!
Tom Isaac honoured with Distinguished Contribution to the Parkinson Community WPC Award
This Award was created to honour those whose efforts best embody the goals of the World Parkinson Congress: to inspire more community building and expand collaboration on basic and clinical research, medical practices, care partner initiatives, and advocacy that impact the Parkinson community. Tom is one of three individuals selected to receive the first of these awards for their outstanding contributions and service to the Parkinson community.
In 2002, Tom undertook an incredible physical and fundraising challenge, walking the 4,500 mile coastline of Britain, climbing the highest mountains in England, Scotland and Wales - then capping it all by running the London marathon! Along the way, Tom met with thousands of people with Parkinson's and researchers. The walk affirmed Tom's interest in advocacy and research into the condition. Two years later, Tom founded The Cure Parkinson's Trust (CPT) - to fund research into slowing, stopping and reversing Parkinson's with the aim of making a difference to those living with the condition within 5 years.
Since its creation, CPT has raised £12 million for research. Tom's vision is to help find a cure for Parkinson's. He believes that only through talking about Parkinson's can we raise the profile of the disease and, with the funding, fast track research to a cure. Congratulations and huge thanks to Tom - a truly deserving winner! Watch Tom receiving his Award.
Tips and Tricks
This year on our Stand we had a mini-studio and filmed people living with Parkinson's, advocates and experts all sharing their advice for living well with Parkinson’s.
It is intended that these films will create a 'heritage' of advice from advocates living with the condition from around the world. These films are available to view in the Tips and Tricks Library under the relevant sections.
The tips and tricks archive will be sourced well beyond WPC and we are asking everyone who has their special tip or trick about any aspect of living with Parkinson’s to get involved! What have you found which makes a real difference to you – a quick daily exercise routine, a neat solution you’ve found for dealing with sleep problems, a simple change in your diet or medication regime that has made a difference and helped with your symptoms?
Please take part by either sharing your tips and tricks or if you've attended WPC and missed our stand please contact Leah.
Speakers and presentations: This year PM advocates were involved in 26 different sessions, as chair, speaker, panelist or presenter throughout the conference including:
Dr Jon Stamford – neuroscientist living with Parkinson’s and director/co-founder of Parkinson’s Movement
Israel Robledo - graduate of the inaugural PDF Clinical Research Learning Institute, founder of Parkinson's Outreach to help PwP pay for their health costs. Milly Kondracke award winner for outstanding advocacy
Steve de Witte - founder of the Connecticut Advocates for Parkinson’s (CAP) with over 100 active constituents. His clinical trials recruitment drive is inspirational
Soania Mathur - a family physician, a dedicated speaker, writer, educator and Parkinson's advocate and the founder of Designing A Cure Inc
Tom Isaacs – Parkinson’s Advocate and founder of The Cure Parkinson’s Trust
Eros Bresolin – film maker, web designer and musician living with Parkinson’s who will be our cameraman and editor
David Sangster – founder of The Young Parkinson's Network, an online and supportive community of 'working age' people living with Parkinson's
Emma Lawton – author of 'Dropping the P Bomb' who will graphic record sessions of the conference
David Jones – marketing consultant and advisor to the pharmaceutical industry and Parkinson's advocate
Parkinson’s Movement was created as a direct result of the meeting of minds of inspired advocates at WPC in Glasgow 2010.
Parkinson's Inside Out
Over the last decade the perception of Parkinson's disease (Parkinson's disease) has shifted radically. PD is no longer regarded simply as a movement disorder caused by dopaminergic deficit. Increased understanding has produced a disparity between the objective assessment of PD (largely motor scales) and the subjective experience of PD (largely non-motor and less readily quantifiable). Both are intrinsically incomplete and, on their own, can give rise to separate parallel misunderstandings of the nature of PD.
Responding to this need, Parkinson's Inside Out (PIO) is a novel think tank of healthcare practitioners and neuroscientists who have all been diagnosed with PD. PIO was assembled in September 2014 with the rationale that the group will be able to speak with authority on both the subjective and objective aspects of PD and that this information would be of value to the wider clinical community. A meeting was held during WPC and we will be able to update you soon.
The meeting was generously supported by UCB Pharma