Rallying to the Challenge, August 2019

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 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.

Agenda Wednesday 21st

Wednesday 21st August 2019


9.30 am Arrivals, registration and coffee

Session One: Basic Foundations

Chairs: Dr Jon Stamford and Ken Pierce

10.00 am

Introduction, welcome and outline of the programme

Dr Jon Stamford

10.05 am

From Mendel’s mice to mom’s mitochondria – The A-Z of genetics

Dr Simon Stott

10.35 am

Somatic Mutation in Parkinson’s

Hugh Johnston

11.05 am Break

Session Two: The patient perspective

Chairs: Gaynor Edwards and Heather Kennedy

11.15 am

From genome to phenome

Dr Paul Cannon, 23andme and Prof Carlie Tanner, Fox Insight

12 noon Lunch
12.15 pm

Ask the experts, Q&A with scientists

Professor Patrik Brundin and panel

12.50 pm

Get Moving I

Led by Josefa Domingues and Kerri Vrynhof and John Dean

1.00 pm

Risk of Parkinson’s matters to scientists and the progression of Parkinson’s matters to patients

Ben Stecher


1.30 pm

Understanding which GBA carriers will develop Parkinson’s disease

Dr Stephen Mullin


2.00 pm

Get Moving II

Led by Josefa Domingues and Kerri Vrynhof and John Dean

2.15 pm

Team Spark Survey on patient attitudes to genetics and PD

Dan and Ginny DeWitt

2.35 pm

Debate: Will increased knowledge about genetics muddy the water or clear the air?

Dr Kevin McFarthing

3.15 pm


Session 3: Data, data, data

Chairs: Kevin McFarthing and Shaun Hindley Team Spark

3.30 pm

The Good News and the bad news: One man’s story

Martin Taylor, Parkinson’s Research Interest Group

3.50 pm

The elephant in the room: The heredity of PD

Heather Kennedy, Soania Mathur and Rebecca Miller (TBC by Skype/Zoom)

‘My Dad: his Parkinson’s through my 13 yr old eyes’ a film by the Acheson family
4.30 pm Break
4.40 pm

What does it mean? How to counsel people with genetic data

Anna Naito and Jennifer Verbrugge, Parkinson’s Foundation

5.15 pm

The Ethical Envelope

Gaynor Edwards

Summary of day one, setting the ground for day 2, key findings identified in preparation of the presentation to Grand Challenges

Dr Jon Stamford and Soania Mathur

5.30 pm Meeting closes
5.30 pm onwards

Posters and Drinks

Agenda Thursday 22nd

Thursday 22nd August 2019


Session Four: The Path to Progress

Chair: Dr Stephen Mullin

9.30 am

Young Onset Genetic Data Bank

Gaynor Edwards with Matt Farrer, Eli Pollard and Larry Gifford by Skype

10.00 am

Evaluating the ethical envelope: Discussion and debate

Led by Heather Kennedy and Alison Sheltrown (TBC)

10.20 am Break
10.30 am

Get Moving III

Led by Josefa Domingues and Kerri Vrynhof and John Dean

10.40 am

Gene therapy – What news?

Dr Paul Korner, Axovant Gene Therapies

11.10 am

The Australian Parkinson’s Mission

Dr Antony Cooper, Garvan Institute

11.45 am Genetics wrap-up
12 noon Lunch
12.15 pm

Session 5: Lifestyle: your questions answered

Led by Shel Bell, Josefa Domingues, Kerri Vrynhof and John Dean

12.30 –
1.10 pm


Facebook Live

Jose Bras, Patrik Brundin, Rita Guerreiro, Ellen Sidransky, Jon 
Stamford, and panel

12.45 pm

Dietary considerations

Shell Bell

1.25 pm Move to auditorium
1.30 pm

Tom Isaacs Award

Professor Patrik Brundin and The Cure Parkinson’s Trust

Presentation to Grand Challenges

Dr Jon Stamford, Dr Soania Mathur, Dan DeWitt, Gaynor Edwards

2.15 pm –
3.15 pm

Get Moving IV

Led by Josefa Domingues, Kerri Vrynhof and John Dean

The Stateside event, hosted by The Van Andel Research Institute (VARI) and organised by The Cure Parkinson’s Trust, will take place this year on Wednesday 21st and Thursday 22nd August. The theme of this year’s conference is Understanding the genetic risk.

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.

Which advocates are attending this year’s meeting?:

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