The Lived Experience Research Advisory Panel
To truly ensure we are harnessing the full range of experience, guidance and opinions of the MND community, The MND Research Collective includes people with lived experience of MND through the Lived Experience Research Advisory Panel (LERAP).
Lived experience of MND can come in many different forms. You may be living with the disease personally, supporting a family member or friend through their disease, have lost a loved one to MND or be a genetic carrier.
Participation in the Lived Experience Research Advisory Panel is managed through The National MND Lived Experience Network. To read about the National MND Lived Experience Network (LEN), please visit this page. If you are interested in receiving updates on the MND Research Collective, and in hearing about vacancies on the Lived Experience Research Advisory Panel, then please join the LEN via this registration form.
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.