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 |
| 10.00am |
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 |
| Q&A | |
| 10.35 am |
Risk of Parkinson’s matters to scientists and the progression of Parkinson’s matters to patients Ben Stecher |
| Q&A | |
| 11.05 am | Break |
| 11.15am |
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 |
| Q&A | |
| 1.30 pm |
Somatic Mutation in Parkinson’s Hugh Johnston |
| Q&A | |
| 2.00 pm |
Genetic screening for GBA Mutations to targets drugs: Pitfalls, prospects and realities Dr Stephen Mullin |
| Q&A | |
| 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 |
| 3.30pm |
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 |
| Q&A | |
| 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 |
| Q&A | |
| 11.15 am |
The Australian Parkinson’s Mission Dr Antony Cooper, Garvan Institute |
| Q&A | |
| 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 –
|
(Parallel session) Facebook Live Jose Bras, Prof Patrik Brundin, Rita Guerreiro, Ellen Sidransky, Dr Jon |
| 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.
Read some recent press releases on the importance of the role of genes in Parkinsons and data ownership:
http://www.pharmatimes.com/news/genetic_parkinsons_cohorts_urgently_need_identifying_1313397
https://pharmaphorum.com/views-analysis-patients/eyeforpharma-patient-summit-europe-roundup/
Which advocates are attending this year’s meeting?:
