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 1: Basic Foundations

Chairs: Dr Jon Stamford and Ken Peirce

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

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

Ben Stecher

11.05 am Break

Team Spark Survey on patient attitudes to genes, genetics and PD

Dan & Ginny DeWitt

11.40 am

Get Moving I

Led by Josefa Domingos, Kerri Vryhof and John Dean

12 noon Lunch
12.15 pm

Ask the experts, Q&A with scientists

Prof Patrik Brundin and panel

1.00 pm

Session 2: Digging deeper

Chairs: Kevin McFarthing and Shaun Hindley Team Spark

1.00 pm

From genome to phenome

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

1.30 pm

Somatic Mutation in Parkinson’s

Hugh Johnston

2.00 pm

Genetic screening for GBA Mutations to targets drugs: Pitfalls, prospects and realities

Dr Stephen Mullin

2.30 pm

Get Moving II

Led by Kerri Vryhof, Josefa Domingos and John Dean

2.40 pm

Debate: The Motion is : This house believes that increased knowledge about genetics will muddy the water not clear the air?

For: Ben Stecher, Against: Gaynor Edwards

Dr Kevin McFarthing (Chair & moderator)

3.20 pm Break

Session 3: Getting personal

Chairs: Gaynor Edwards and Heather Kennedy

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, Steve DeWitte and Rebecca Miller (TBC by Skype/Zoom)

4.25 pm ‘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 Jeanine Schultze, Parkinson’s Foundation

5.15 pm

The Ethical Envelope

Gaynor Edwards

5.20 pm

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 Steve Dewitte

5.30 pm End of Day One
5.30 pm onwards Posters and Drinks
Agenda Thursday 22nd

Thursday 22nd August 2019


Session 4: The Path to Progress

Chair: Dr Stephen Mullin

9.30 am

Young Onset Genetic Data Bank

Gaynor Edwards with Matt Farrer and Larry Gifford by Skype

10.00 am

Evaluating the ethical envelope: Discussion and debate

Led by Heather Kennedy and Steve DeWitte/Alison Sheltrown (TBC)

10.25 am Break
10.35 am

Get Moving III

Led by Josefa Domingos, Kerri Vryhof and John Dean

10.45 am

Gene therapy – What news?

Dr Paul Korner, Axovant Gene Therapies

11.15 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 Domingos, Kerri Vryhof and John Dean

12.30 –
1.10 pm


(Parallel session)

Facebook Live

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

12.45 pm

(Parallel session)

Diet matters

Shel Bell

1.25 pm Move to auditorium
1.30 pm

Tom Isaacs Award

Prof Patrik Brundin and The Cure Parkinson’s Trust

1.40 pm

Presentation to Grand Challenges

Panel of advocates led by Dr Jon Stamford

2.15 pm –
3.15 pm

Get Moving IV

Led by Josefa Domingos, Kerri Vryhof 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.

This year’s Rallying to the Challenge survey looked at attitudes, understanding, and misunderstanding(!) about the role of genes in the development, progression, and treatment of Parkinson’s disease (PD). Click here to read the topline survey findings.

Read some recent press releases on the importance of the role of genes in Parkinsons and data ownership:



Which advocates are attending this year’s meeting?:

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