Lived Experience Advisory Group

Dr Gill Lewis is a registered nurse (RN). She retired early at the beginning of 2024 from an academic career with the intention of travelling Australia with husband Tony in a newly purchased caravan. Gill was a Senior Lecturer and Undergraduate Course Coordinator at an Australian university after a nursing and academic career spanning 40 years. She has held senior roles in healthcare education, university and as a practicing clinician. Gill wishes to be advocate for those affected by MND. Tony became unwell shortly after Gill retired and was diagnosed with Motor Neurone Disease (MND) March 2024 at the age of 69. He died by VAD in January 2026.

Essentially, Gills’ motivation to be involved in MND focused research is simple, she wishes to be a voice and an advocate for those affected by MND. Too often, MND remains on the periphery of public awareness, although recent events have pushed the disease into the spotlight. Gill completed a Doctor of Philosophy program in 2020 and was a teaching focused academic with senior level portfolio which included implementation and coordination of a Bachelor of Nursing degree at a multi-site Australian university. By involvement in MND research as a consumer researcher she hopes to share their lived experiences in ways that can inform and enrich future research to shape better care practices and influence policy, especially for those over 65.

Peter Chambers is a successful businessman, sportsman and loving family man who was diagnosed with Motor Neuron Disease (MND) in 2020. Peter chose to confront the challenges head-on by becoming a public advocate for others living with the disease by appearing on numerous Podcasts, speaking publicly, creating video content and raising funds to support others with the illness. Peter refuses to be silenced by adversity, and sees life through a lens of determination, courage, love and happiness.

Dr Barry L Werth

Barry cared for his wife who was diagnosed with MND and passed away in 2013. He is a pharmacist who has worked in the Australian pharmaceutical industry for over 40 years. He has a PhD in epidemiology/pharmacoepidemiology (University of Sydney), an honours degree in pharmacy (University of Queensland) and an MBA (Deakin University). His pharmaceutical industry experience has included general management, regulatory affairs, clinical research, new product development, marketing and sales. Since retiring from full-time work in 2014, he has worked as a medical editor (editing medical research manuscripts prior to publication), as well as an author of manuscripts (including an article on MND for pharmacists) and units for a university course book. He continues to work part-time 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 and Content Advisory Group of the Australian MND Guideline, and a Research Affiliate of The University of Sydney.

My journey with Motor Neurone Disease began in 2021, when my beloved mum was diagnosed with Bulbar-onset MND. Over nearly five years, I stood by my Mum’s side through every challenge; navigating the aged care system, advocating for her basic needs, and witnessing firsthand the systemic gaps that leave so many families unsupported. It was a path marked by love, resilience, and heartbreak, one that changed my life forever.

In August 2024, I joined the MND Australia Lived Experience Network (LEN) to honour Mum’s legacy and help ensure no family feels alone in this fight. Since her passing in November 2024, I’ve continued to advocate with compassion and purpose—amplifying the voice of lived experience through roles such as the Lived Experience Advisory Group (LEAG). I remain deeply committed to building a future where every MND-affected family feels heard, supported, and treated with the dignity they deserve.

Anthea Smith is a passionate MND advocate and full-time carer for her husband, Jason, who was diagnosed at 39 years old with motor neurone disease in 2017.

With a professional background in strategic communications, stakeholder engagement, and content development, she combines her skills and lifelong passion for connecting people with a deep personal commitment to improving the lives of those affected by MND.

Through her role in MND Australia’s Lived Experience Network and regular advocacy to state and federal decision-makers, Anthea works to ensure the voices of people living with and caring for someone with MND are heard in research, policy, and care decisions.

Pippa was born and attended school in a village called Poynton in Cheshire, UK, she then went to Nottingham School of Nursing to complete her Registered Nurse training. After a short time in the National Health Service she joined the Royal Air Force (RAF) as a Nursing Officer and served 20 years in the UK and on postings and deployments overseas.  She worked predominately in the field of trauma and aeromedical evacuation, before going into the management side of the nursing branch. She met her Australian, future husband whilst on a senior management course while he was doing an exchange tour to the UK. Pippa left the RAF in 2008, moved to Australia and married Steve and continued her nursing clinical career in Australian public hospitals, and lastly, at a medical centre as a Practice Nurse.

She retired in 2022 and has since filled her days with Reformer Pilates, dog walking (not just her own), catching up with friends, supporting her husband’s continuing career in the Royal Australian Air Force and travelling for holidays and visiting family in the UK. Pippa now lives in Canberra, ACT, with her husband Steve, and greyhound, Fawna.

However, in 2022 her husband started becoming ill and after several months of investigations, tests, Drs appointments and worry, Steve was diagnosed with MND in June 2023.  Despite her nursing experience, nothing had prepared her for the impact of this diagnosis, illness and journey so far on Steve and herself. Steve and Pippa are being very well supported by Defence, the MND Clinic at Canberra and family and friends, but they are keen to be involved in the Australian MND Guideline project to heighten awareness of MND, aim for a consolidated set of MND guidelines for professionals, patients and carers and support the essential need to find a cause, treatment and ultimately a cure for MND.

Geoff Thomas BAgSc, MAgExt, OAM

Following a successful career in agriculture in which he led research, adoption and policy at the highest levels, Geoff cared for his wife Mary four 4 years following her diagnosis with MND. During this time, they established the Thomas MND Research Group (TRG), a largely family funded philanthropic entity which has supported a range of initiatives, most of which have been centred on improving the wellbeing of those touched by MND. One such initiative is the MiNDAUS Partnership which apart from NHMRC, has received substantial funding and in-kind support from TRG, including Geoff being its Executive Project Manager. The Partnership which includes leading clinicians and service providers, has successfully developed and rolled out the MiNDAUS Patient Registry. The Registry has 900+ patients registered and aims to encompass 80% of patients in Australia.

Geoff has been a Board member and Chair of MNDSA and on the Board of MNDA. He currently Chairs to MiNDAUS/MNDA Committee, charged with improving patient care. He has been involved in previous initiatives to develop improved Guidelines and understands the challenges. Geoff has been and is currently customer representative on several health care research projects, and the coauthor of several papers in international journals.

He has well established networks, including industry and government, and is an experienced project manager.

I’m Heather, I have MND and here to fight for the Warriors and the care and for the rights we should all have. Love and light to all x

My journey is one of strength, resilience, and compassion. Diagnosed with MND in 2012 while working as an Occupational Therapist in the UK, I returned to Australia with my husband and two sons, where we found expert care at Macquarie University. Determined to create change, my high school friends founded MotorOn, which I now proudly chair. Together, we have raised over $2 million for MND research. My story is a testament to the enduring power of friendship, purpose, and community.

In 2022, my life changed dramatically when I was diagnosed with Motor Neurone Disease (MND). What began as a deeply confronting diagnosis soon became a turning point, a call to action. Refusing to be defined by limitation, I channelled my energy into advocacy, transforming my personal journey into a platform for awareness, inclusion, and change.

As an Ambassador for MND Australia, I am committed to amplifying the voices of those affected, fostering compassion, and driving meaningful progress in how society understands and responds to this devastating disease.

My diverse experience across the private, public, and non-profit sectors, with expertise in leadership, behavioural change, governance, and stakeholder engagement at the senior and Board level. I have a distinguished 35-year career in the Royal Australian Air Force which instilled me with a profound sense of service, discipline, and resilience. Qualities that continue to shape my approach to advocacy and public engagement. Today, I blend lived experience with strategic insight, working to influence policy, research, and community understanding around MND.

I’m a mother of two busy teenagers, a wife of 20 years and a former Midwife and Clinical Educator in the public health sector. I live a quiet life in a small coastal community close to the beach where I spend much of the summer season. I’m an active volunteer, have a love of coffee, cooking, yoga and family holidays.

In August 2024 I was diagnosed with MND. My life is continually changing and requires constant adjusting yet has a welcoming balance of routine through parenting socially active children. I am becoming increasingly involved in the MND space as a person with lived experience – advocating, sharing my story and finding new meaning to living a life with MND.

I’m proud to contribute to the Australian MND Clinical Guideline as a member of the Lived Experience Advisory Group. My connection to MND spans generations — both my grandmother and father lost their lives to the disease, and I carry a known genetic mutation. This lived experience fuels my advocacy across national and international spaces, where I work to unite those impacted by familial MND, amplify our perspectives, and share the hope I see emerging through research and community-led change. Through this project, I hope to help embed the voices of those with genetic and familial experience into the foundation of meaningful, inclusive care.

I’m a teacher by profession, and an artist and explorer by nature. Whether through creativity or conversation, I’m passionate about building understanding, fostering connection, and helping others feel seen and supported.

Jane Simpson became a passionate advocate MND community after the loss of her husband, Robert, who passed away just 10 months after his MND diagnosis.

Since then, Jane has dedicated herself to raising awareness, supporting carers, and helping drive change for those living with MND. 

She serves as an Ambassador for MND Australia and produces and hosts the Podcast “Let’s Talk MND”.

Jean Downton has been a member in the MND community, dedicating herself to supporting those affected by MND. For the past ten years, Jean has lived alongside her husband Greg, who has battled MND, providing him with constant love, care and advocacy. Her firsthand experience with the challenges of MND inspired her to take action and she and Greg established a support group for people affected by the disease. Through this group, Jean has created a vital space for connection, friendships, and shared experiences – helping others navigate their journeys with MND and through the challenges it brings.

Beyond her local efforts, Jean has also volunteered extensively with various organisations, including MNDSA, contributing to fundraising initiatives, awareness campaigns, and MND research. Her dedication has extended to working with the South Australian government where she has, along with others, advocated for increased funding for people living with MND in South Australia.

For Jean, ensuring those who have to live with MND have access to essential services and resources is a priority. Being able to offer hope and support to the individuals and families affected by MND gives Jean a sense of purpose and is her way of fighting the Beast!