A national forum on end-of-life support for people with Motor Neurone Disease (MND) will work to find better ways to help carers navigate what some have described as the ‘roller-coaster from hell’.
The forum, to be held in Melbourne on Wednesday 5 August, will bring together people with lived experience of MND, researchers and clinicians, professionals from the health, disability, palliative, aged and community care sectors, and representatives from government and not-for-profit support organisations.
MND has been in the spotlight following the recent death of former AFL footballer and coach, Neale Daniher AO, who was diagnosed with MND in 2013 and died last month, and the diagnoses of NRL Rabbitohs forward Jai Arrow and Bryan Cousins, father of AFL star Ben Cousins.
A 2025 national survey captured the lived experience of people diagnosed with the disease and those who care for them, revealing deep exhaustion and frustration at trying to navigate fragmented services that often operate in silos.
Carers reported that a diagnosis of MND, which currently has no cure, brought emotional, physical, psychological, social, practical, financial and existential challenges both before and after the death of a loved one.
The National Forum on End-of-Life Care for People Living with MND – put together by 2023 WA Australian of the Year Professor Samar Aoun AM, who is Perron Institute Research Chair in Palliative Care at The University of Western Australia and Chair of Compassionate Communities Australia – will seek to address those challenges by developing a more proactive, coordinated response to support families and carers.
“We already know the intense challenges families and carers are living with – what we need now are solutions,” Professor Aoun said.
“Until there is a cure there is care, and we need to give more attention to how we care and support those living with, dying from and grieving because of this traumatic disease. The way to do this is by reorienting systems of care and activating compassionate communities around these families in need.”
The forum – funded by FightMND, co-founded by Neale Daniher in 2014 – will bring together key stakeholders at a national level for the first time.
“The purpose is to co-design an integrated, equitable and evidence-informed standard approach to end-of-life care for people living with MND, grounded in family carer experience,” Professor Aoun said.
Discussions will focus on improving access to palliative care, psychosocial and bereavement support for family carers, workforce capability and the redesign of clinical systems, professional training and education for people working in care settings, and funding inequity and reform.
Registrations for the forum close on 30 June and can be made here.
Image above: The late Neale Daniher AO watches a participant in the Big Freeze fundraising event. Photo credit: Fiona Hamilton
Preview image: Professor Samar Aoun AM (right) with Drew Bathgate, an MND patient and friend who died last year, and his wife Maureen.