Making Rapids Progress in Understanding Parkinson’s

*Following this year’s Rallying to the Challenge, we will be hosting a live international update meeting on the 1st November. This meeting is kindly hosted by the Bentley Academy in London and will be broadcast online. Please click here for more information.

Every year, the people who know the condition inside out – those diagnosed with Parkinson’s – rub shoulders with those working towards a cure at Grand Rapids, Michigan. Only the World Parkinson’s Congress has a similar emphasis in involving those with the condition. Grand Challenges in Parkinson’s and its parallel meeting Rallying to the Challenge involves and engages PwPs in the research agenda. Keep an eye on this page for updates and outcomes from this year’s meeting.

Presentations from Wednesday
Agenda Wednesday 26th

Non-Motor Symptoms: Impact, correlation, symptom relief, symptom monitoring

Wednesday 26th September 2018

 Grand Challenges Program:  Jay Van Andel Award for Outstanding Achievement in Parkinson’s Research

10.20

Welcome to Rallying to the Challenge 2018

Steve DeWitte, Soania Mathur, David Jones

10.25

For 185 years a number of non-motor aspects of Parkinson’s were ignored –  what are we missing now and can Fox Insight help us identify these aspects?

Dr Brian Fiske Fox Insight – MJFF for Parkinson’s Research

10.45

Impact of non-motor symptoms from a clinical perspective. Personalised medicine, phenotypes and moving forward? 

Professor Ray Chaudhuri, Kings College London

11.15

The language of fatigue

Led by Dr Jon Stamford, Leah Mursaleen

11.30

CPP Survey findings

Claire Bale, Parkinson’s UK with Richard Windle

11.40

More about fatigue

Dr Angie Kehagia and Dr Joy Duffen

12.30

Your questions answered

Drs Patrik Brundin,  Nico Bohnen and Michele Hu

1.30

Moving Evidence: The Impact of Exercise on Non-Motor Symptoms

Sara Garvey, Davis Phinney Foundation and Alison Sheltrown and Jillian Carson

2.30

Parkinson’s Patient Phenomena Survey findings: impact on PwP and their families of aspects of Parkinson’s symptoms

Dan and Ginny DeWitt, Shaun Hindley, Bruce Mabee, Ken and Jill Peirce, Louis Bouma, Gloria Groner and Ron Rutowski

3.30

Focus Group: Sleep, Cognitive, Personality and Behavioural aspects Tools needed for identification/measurement/evaluation of impact

Led by: Dan and Ginny DeWitt, Shaun Hindley, Bruce Mabee, Ken and Jill Peirce, Louis Bouma, Gloria Groner and Ron Rutowski

4.30 Feedback from Focus Groups
5.00 World Parkinson’s Congress
Presentations from Thursday
Agenda Thursday 27th

Non-Motor Symptoms: Impact, correlation, symptom relief, symptom monitoring

Thursday 27th September 2018

 Grand Challenges Program:  Jay Van Andel Award for Outstanding Achievement in Parkinson’s Research

9.30

Monitoring and measuring non-motor symptoms: the challenge

Dr Camille Carroll

10.00

Issues in Parkinson’s: Sleep disorders

Ben Stetcher

11.15

Parkinson’s Movement: explaining research, celebrating advocacy and contributing to research

The Parkinson’s Movement Team: Eros Bresolin, Gaynor Edwards, Julia Jockelson and Helen Matthews

11.55

Concluding comments

Dr Soania Mathur, Steve DeWitte, David Jones

12.15

 

12.15-45

 

Your questions answered

Panel of clinicians Drs Kathleen Shannon and Ron Postuma

Facebook Live

Professors Patrik Brundin, Ray Chaudhuri, Viviane Lebrie and Dr Jon Stamford

1.00

1.15

 

Presentation of the Tom Isaacs Award

Presentation to Grand Challenges in Parkinson’s

Claire Bale, Parkinson’s UK with Richard Windle

The Stateside event, hosted by The Van Andel Research Institute (VARI) and organised by The Cure Parkinson’s Trust (who fund and support this website) took place this year on Wednesday 26 and Thursday 27 September. The theme of this year’s conferences was Non-Motor Symptoms – for many just as frustrating, if not more so, than the well-documented movement-related symptoms.

In addition to an overview of non-motor aspects of Parkinson’s, this year’s Rallying explored fatigue, exercise and sleep and this year’s survey was designed to understand the psychological impact of symptoms on people living with Parkinson’s and their families.

Taking place at the Van Andel Research Institute (VARI) and jointly hosted by Dr Patrik Brundin and his team at VARI, along with CPT, patient input is actively encouraged – very much in the style of Tom Isaac’s vision, maintained by The Cure Parkinson’s Trust.

Dr K Ray Chaudhuri was the keynote speaker at this year’s event. He and his team at King’s College London are largely responsible for highlighting this area of research.

Wednesday 26 – Thursday 27 September – Theme: non-motor symptoms.

Which advocates attended Rallying this year?:

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