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Involving People with Lived Experience in Neuroprogressive and Dementia Research

Date: 16/09/2022 to 16/09/2022 Venue: John McIntyre Conference Centre, The University of Edinburgh, 18 Holyrood Park Road, Edinburgh, EH16 5AY

A stimulating event centred on those with lived experience of dementia and neuroprogressive illnesses in research, described as 'catnip for the brain' by the NHS Research Scotland Neuroprogressive and Dementia Network's (NRS NDN) Partners in Research group

This year's Neuroprogressive and Dementia Network's annual conference will be a day focused on those most impacted by research outcomes, and an opportunity to learn from their experiences to improve the research landscape.

The event will be hybrid, with the option to attend in-person or online.

The Network are excited to be welcoming speakers from the entire sphere of those affected by, and involved in, research - from those who take part in research as participants, industry leads, and researchers themselves. We are looking to provide a holistic overview of the research landscape and generate grass-roots ideas on how to improve outcomes


The programme for the day is still being finalised, and therefore subject to change.




Registration and coffee


Welcome and introductions

Emma Law NDN Manager and Tom Russ NDN Champion


1st KeyNote talk

Henry Simmons, CEO Alzheimer Scotland


MS trio

 Abhishek Behl, Person with lived experience of MS

Morna Simpkins, MS Society Scotland Director

 Javier Carod Artal, Consultant Neurologist and MS researcher


3 Short presentations highlighting research and inclusion of people with lived experience

Jacqueline Kerr, Masters Student University of Stirling

Maria Drummond, PhD student University of Glasgow

Mary Njoki, PhD student University of Stirling


Coffee break and posters


Huntington's Disease (HD) trio

Lorna Milne, Person with lived experience of HD

Pete Foley, Consultant Neurologist and HD researcher

Louise McCabe, Senior Lecturer in Dementia studies and Scottish Huntington’s Association representative


How are other organisations involving people in what they are doing?

Insights from

Join Dementia Research(JDR),  National Dementia Carers Action Network(NDCAN)


Alzheimer Scotland Brain Tissue Bank

Tom Russ, Director of the Alzheimer Scotland Dementia Research Centre

Denise Munro, Alzheimer Scotland Dementia Research Centre


 Lunch and posters


Parkinson's Disease (PD) trio

James Jopling, Scotland Director of Parkinson’s UK

Parkinson’s researcher TBC

Person with lived experience of Parkinson’s TBC


Co-Production, 2nd Keynote Talk

Rosie Ashworth, lead for NDN Partners in Research, introducing some of the Partners and their work


MND trio

Rachel Maitland, CEO MND Scotland

Suvankar Pal, Consultant Neurologist and MND researcher

Person with lived experience of MND TBC


3rd Keynote Talk

Dianne Gove Director for projects, Alzheimer Europe


Research in action: Results from walking speed measurement

Donncha Mullen, Trainee Psychiatrist and researcher

14:50 - 15:15

Roundup / close out / prizes

Emma Law and Tom Russ


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