The Lived Experience Research Advisory Panel
The Lived Experience Research Advisory Panel (LERAP) forms an integral part of the MND Research Collective, ensuring that the lived experience voice is at the heart of MND research in Australia. It primarily includes people with lived experience, as well as representatives from MND Australia, FightMND, care research and discovery research.
LERAP is chaired by a person with lived experience and supported by a Vice Chair with lived experience. The Chair also serves on The Collective Board.
Monthly online meetings are held, with the purpose being to:
Strengthen collaboration between people with lived experience and researchers to improve MND research outcomes.
Guide The Collective’s strategy by sharing lived experience insights and priorities.
Advocate for lived experience perspectives in national MND research discussions.
Educate and support researchers to keep research grounded in real-life needs.
Support co-design of meaningful research.
Identifying gaps and inform priority areas for research.
Improve national communication to ensure research updates and opportunities are accessible, transparent, and easy to understand.
LERAP membership is managed through The National MND Lived Experience Network (LEN). To read about or join the LEN, please visit this page.
Phil Camden
Chair
Phil Camden
Chair
Phil is Chair of the MND Collective Lived Experience Research Advisory Panel and possesses 12 years of lived experience, having received his MND diagnosis in early 2013.Phil actively engages in many initiatives including administrator of the Australian MND group Facebook page, “Connect, Share, Support,” which has amassed 1,400 members. He is on the panel for The Australian MND Guidelines and The MND Australia Lived Experience Network Approval Panel. Phil is also on the Non-Invasive Ventilation Stakeholder Advisory Group, The Community of Practice for MND Care and is the Bairnsdale FightMND DIY Fundraiser Ambassador.
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Dr Barry Werth
Vice-Chair
Dr Barry Werth
Vice-Chair
Barry cared for his wife who was diagnosed with MND and passed away in 2013. He is a pharmacist with a PhD (epidemiology/pharmacoepidemiology) and has worked in the Australian pharmaceutical industry for over 40 years. Since retiring from full-time work in 2014, he has worked as a medical editor, has published an article on MND for pharmacists, and continues to work as a consultant to Australian and foreign pharmaceutical companies. He is Co-Chair of the Lived Experience Research Advisory Panel and member of the Lived Experience Network of MND Australia, Co-Deputy Chair of the Lived Experience Advisory Group and member of the Clinical & Content Advisory Group of the Australian MND Guideline, and is a Research Affiliate of The University of Sydney.
Andrew Cannone
Andrew Cannone
Living with MND - NSW
Anthea Smth
Anthea Smth
Current carer - ACT
Gill Lewis
Gill Lewis
Current carer - QLD
Giulia Valente
Giulia Valente
Current carer - VIC
Hazmir Mohamadan
Hazmir Mohamadan
Living with MND - VIC
Janet Hough
Janet Hough
Living with MND - VIC
Keith Malpress
Keith Malpress
Living with MND - QLD
Michael O'Hehir
Michael O'Hehir
Living with MND - NSW
Peter Shack
Peter Shack
Living with MND - WA
Rob Ferrari
Rob Ferrari
Living with MND - NSW
Ronald Hobden
Ronald Hobden
Living with MND - NSW