Annual review 2016 – 2017

Annual review 2015–2016



President Report

In 2016 – 17 MND Australia delivered on the milestones and targets in our Strategic Plan 2015 – 2018. During the year the board recognised the need to undertake an external review of the organisation and the current environment to inform the strategic repositioning of MND Australia. 
We have supported our members through the challenges associated with the roll-out of the National Disability Insurance Scheme and Aged Care Reforms. We have continued to meet with Ministers and other influencers to advocate for a fairer system for all people living with MND. In particular we have lobbied for the right to access fast-tracked care and support services to meet the complex, progressing and changing needs of people living with MND, no matter their age.
Internationally we have actively supported the work of the International Alliance of ALS/MND Associations, worked to promote access to the best care and support in our region and support engagement with the Pan Asian Consortia for Treatment and Research in ALS (PACTALS) and the Australian MND Registry. 

There is still hope that the disease will be defeated. Until a cure is found, MND Australia and our members – the State MND Associations – will continue to work as a national network; drawing on 35 years of expertise to promote the delivery of equitable, quality services for people living with MND.

> Read more about our achievements



Chief Executive Officer Report

Communications and campaigns are key activities in advancing awareness and understanding of MND in the community. During MND Week in May we launched the #LifeMeasuredinMoments social media campaign.  This campaign featured personal stories to highlight not only the impact of MND on people diagnosed but also the enduring impact on families, health professionals, MND association staff, advocates, volunteers and scientists. 
This Global day, June 21, MND Australia contributed to the International Alliance of ALS/MND Associations ‘Cheers to an End to ALS/MND’ campaign. This global campaign provided the opportunity for the ALS/MND community to recognise and honour people living with ALS/MND and their families around the world as well those who work tirelessly towards a future free from this devastating disease. Once again we invited federal MPs and Senators to wear a blue cornflower in Parliament on 21 June to show their support for the thousands of Australians impacted by MND.  We thank our friends in Parliament, Alex Hawke MP and Senator Carol Brown, for distributing cornflowers for us in the House and Senate.
As a member of the Neurological Alliance of Australia, NAA, MND Australia contributed to the development of a joint position paper which was launched at Parliament House, Canberra, in April.  This position statement calls for equitable and effective support within the NDIS for people with progressive neurodegenerative diseases and increased investment in research thereby supporting and strengthening our advocacy efforts.

> Read about other MND Australia accomplishments


Executive Director Research report

The 2016 – 2017 year marks the 30th anniversary of the Motor Neurone Disease Research Institute of Australia (MNDRIA) and allocation of its first research grant in 1987. More than $25 million has been invested in MND research over 30 years. To acknowledge this landmark, researchers previously funded by MNDRIA were invited in April 2017 to make a submission to the organisation about their research achievements. The result was a report $25 Million: 25 Milestones, changing the future of MND to be launched at the 13th MND Australia Research Conference on 10th November 2017 by Assistant Minister for Health the Honourable David Gillespie MP.
The past year has seen a number of significant research findings. Research led by Dr Mary-Louise Rogers at Flinders University has found a new and simple test to monitor disease progression in people with MND and evaluate drugs under investigation in MND clinical trials. Research led by University of Queensland scientists Associate Professor Trent Woodruff and Dr John Lee found a drug “PMX205” extends the life of mice that have a SOD1 mutation. More studies are now underway to determine the safety of PMX205 before it can be tested in humans.
MNDRIA awarded $3.75 million to 32 new research projects in 2016 – 2017, including support for four healthcare studies. Two new grants were awarded in addition to two three-year fellowships and 29 grants-in-aid: the Betty Laidlaw Prize for an outstanding mid-career researcher and the Charcot Grant, to be awarded annually for the highest-ranking grant-in-aid. 

> Read about other MND research advances


2016 – 2017 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 2016 – 2017:
  • 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

For MND Australia a total income of $1,324,716 was received compared to the $1,700,490 in the previous 12 months. This difference can be attributed to fewer funds received from State MND Associations for transfer directly to our research arm, the MND Research Institute of Australia (MNDRIA), than in the previous year. In 2016/17 most State MND Associations transferred their research funds directly to MNDRIA. 

The funds received by MND Australia support us in our mission to promote, influence and advance MND care and research through national communications and campaigns, advocacy, research funding and education. Our members, the State MND Associations, provide funds via membership fees to support MND Australia as the national voice for MND. We work collaboratively to improve the lives of all Australians living with MND. 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 are kept to a minimum. Unsolicited funds from donors and fundraisers are therefore vital in supporting our work.

Income from unsolicited donations in 2016/17 was in line with the previous 12 months. However, this is largely attributable to one significant donation (bequest). Overall there is a downward trend that will need to be closely monitored.  

> Read more


Related links


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International Alliance of ALS/MND Associations

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