Annual review 2018 – 2019

Annual review 2015–2016



Chief Executive Officer Report

MND Australia and its members, the State MND Associations, form the only national network focused on improving the lives of all Australians living with motor neurone disease (MND). For over 35 years this national network has helped increase understanding of the disease and advocate for improvements in its treatment and care to ensure people living with MND have the best quality-of-life possible.

Investment in research is a priority for our network, and over the last 32 years, through our research arm the MND Research Institute of Australia (MNDRIA), more than $32 million donated by the Australian community has been invested in research with the greatest chance of realising our collective vision of a world without MND.

During 2018 to 2019, as the board worked to review our position and develop the Strategic Plan 2020 to 2022, we have maintained our quest to advocate, inform and connect to improve the lives of people living with MND and advance research to end MND.

> Read more about our achievements


Executive Director Research report

2018 saw a number of some changes in leadership of MND Australia's research arm, the MND Research Institute of Australia (MNDRIA).

This is my first report since joining MND Australia in June 2019 as the Executive Director, Research. I would very much like to thank Janet Nash who has handed on to me a fantastic organisation which she had managed over the last 14 years. Janet’s comprehensive handover and willingness to be on speed-dial has also made for a very smooth transition.

In May 2018 Stephanie Williams stepped down from the role of Executive Director of Research after ~2 years in the role where she oversaw many structural and strategic reforms for MNDRIA. Janet Nash generously stepped back into the Acting Executive Director Role until my recruitment.

> Read more about MNDRIA


2018 – 2019 highlights

MND Australia works to promote, influence and advance MND care and research to improve the lives of all Australians living with MND as we work towards the vision of a World without MND.
We do this through:

Communicating and campaigning
Research funding  
Educating and engaging internationally 



Communicating and campaigning

Together with the State MND Associations, MND Australia continued to promote and advance awareness and understanding of MND in the community in 2018 – 2019:

  • Our Make Aged Care Fair campaign launched an 'email your MP' tool in October 2018. This  provided a straightforward and user friendly avenue for the wider MND community to easily contact their local federal MP to both highlight the inadequacies in the Aged Care system for people living with MND and include their personal stories.  

  • MND Week 2019 coincided with the Australia federal election campaign. During MND Week we focused heavily on creating awareness and engagement with the Make Aged Care Fair campaign. In the weeks leading up to the election, we switched the focus to an 'email your candidate' tool, and we called for election candidates to pledge their support behind a range of measures to improve the Aged Care system for people with MND.



During the year MND Australia worked to influence policy to ensure access to timely needs based care and support no matter a persons age or postcode. With our members we have engaged with Ministers, opposition spokespeople, MPs, senators, advisors and the National Disability Insurance Agency.

MND Australia has also made written submissions and responses to change policy and improve access to care and support, including:


  • Submission to NDIS Annual Price Review and contribution to the NDIS Thin Markets Project
  • Statement outlining six steps to improve the lives of people living with MND to all federal candidates in advance of the 2019 Federal Election.
  • Pre-budget submission to the Australian Government in advance of the 2019 to 2020 Federal Budget. 











During 2018-2019, MNDRIA funded only the best research to improve quality of life and move us closer to a cure. 

  • MNDRIA awarded close to $4 million for 32 new research projects in 2019, funded through generous donations
  • MND Australia held the 14th annual MND Australia Research Conference in November 2018 to foster information sharing and collaboration between Australia’s leading researchers
  • MND Australia appointed Dr Gethin Thomas as Executive Director, Research
  • Development of MND Australia’s new research strategy for 2018 – 2021: Investing in Innovation, Partnering for Progress



MND Australia holds annual events to inform and educate to improve care and empower people living with MND:

  • In September 2018, MND Australia and host MND South Australia delivered the 9th National MND Conference in Adelaide - MND Care: Informing, Influencing, Innovating. The conference welcomed over 250 health and community professionals with a program that covered a wide range of topics relevant to the care and support of people living with MND from diagnosis through to end of life.  
  • Following the 14th MND Australia Research Conference, MND Australia hosted MND Connect 2018. MND Connect is an interactive forum connecting people impacted by motor neurone disease with Australia's leading MND researchers. Joining Australia’s leading scientists with people experience MND firsthand allowed a unique and invaluable flow of information.

Engaging internationally 

MND Australia is an active member of the international  ALS/MND community and has been part of the International Alliance of ALS/MND Associations since its creation 27 years ago. MND Australia recognises the vital importance of working with colleagues from around the world, and specifically in the Asia Pacific region, to improve the lives of people living with MND and move us closer to our shared vision of a world without MND.

During 2018-2019, MND Australia participated in three key international meetings:

  • 26th Annual Meeting of the International Alliance of ALS/MND Associations, Glasgow, UK
  • 29th International Symposium on ALS/MND, Glasgow, UK
  • Pan-Asian Consortium for Treatment and Research in ALS (PACTALS) Symposium, Seoul, Korea


treasurer report

MND Australia received a total income of $845,201 in 2018/19 compared to $1,267,757 received in the previous 12 months. This difference in income was influenced primarily due to research contributions from MND Victoria made directly to our research arm the MND Research Institute of Australia (MNDRIA) rather than to MND Australia as in previous years.

MND Australia received general donations specified for research of $40,000 which was transferred to MNDRIA and $50,000 to support the Australian MND Registry which was transferred to the funds committed to the Australian MND Registry at year end. 

The remaining $755,201 received by MND Australia supports us in our mission to promote, influence and advance MND care and research to improve the lives of all Australians living with MND. Our members, the State MND Associations, provide funds via membership fees to support MND Australia and the work we undertake nationally on their behalf. In recognition of the focus of our members on providing direct support and services to people living with MND, their friends and families, membership fees continue to be kept to a minimum.

> Read more from the treasurer


Related links


Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity


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