Annual review 2018 – 2019

Annual review 2015–2016



President Report



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 2019 to 2023, 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 at 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


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 

Malcolm Turnbull, Prime Minister of Australia


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:
  • Global Day 2017 saw many MPs and Senators wearing the blue cornflower in Parliament, including Prime Minister, Malcolm Turnbull. To have so many politicians recognise and support the thousands of Australians past and present impacted by MND was a significant milestone in raising national awareness of MND.
  • Through MND Week and Global Day, we achieved a social media reach of over 300K. We used digital platforms to effectively raise awareness of MND, particularly through use of the hashtag #LifeMeasuredinMoments. This hashtag accompanied several touching videos of people living with MND, educating the online community through messages of hope and strength and encouraging others to share their experiences.





During the year MND Australia worked to influence policy to ensure access to timely needs based care and support:

  • With our members we have met with Ministers, opposition spokespeople, the NDIS, the National Disability Insurance Agency, aged care department and made written submissions to change policy to ensure fast track access to coordinated needs based care and support.  

  • As a member of the Neurological Alliance of Australia, MND Australia attended the launch of a joint position paper at Parliament House, Canberra, calling for equitable and effective support within the National Disability Insurance Scheme (NDIS) for people with progressive neurodegenerative diseases and increased investment in research.




International Alliance of ALS/MND Associations 2016



During 2016 –2017, MNDRIA funded only the best research to improve quality of life and move us closer to a cure: 

  • Funding 35 new research grants in 2017, with $3.75 million from MNDRIA donations awarded at the Grants Allocation Meeting in 2016.
  • MND Australia held the 12th Research Conference 2016 to foster information sharing and collaboration between Australia’s leading researchers .



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

  • In September 2016, MND Australia and host MND Victoria delivered the 8th National MND Conference which promoted informative and thought-provoking discussion on several areas in MND care and research. The Conference featured speakers from across Australia who shared updates on scientific advances, community services, palliative care collaborations and best practice care to 260 attendees from the healthcare community.  
  • Following the 12th Research Conference, MND Australia hosted MND Connect 2016. 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 has been actively engaged in the International Alliance of ALS/MND Associations since it was formed 25 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. 


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.

> Read more from the treasurer


Related links


Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity


MND Australia would like to advise Aboriginal and Torres Strait Islander users that this website may contain images or names of deceased persons.