Annual review 2017 – 2018







 
Annual review 2015–2016







 
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President Report


During 2017 –18 MND Australia has focused on delivering the final milestones and targets as set in our current Strategic Plan 2015 to 2018. At the same time we undertook an external review of the organisation and the current environment to assist with the development of the next Strategic Plan. This external review was presented to the board at the meeting in November 2017 and provided the catalyst for the organisation to engage with members during 2018 to confirm our position and priorities for the future. Discussions will continue as we work to develop a new strategic plan to be launched in 2019.   
 
We have continued to support our members through the challenges associated with the roll-out of the National Disability Insurance Scheme and the increasing gap between access to services for those entitled to access the NDIS and those diagnosed with MND when aged 65 or older. 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.
 
We have continued to build on our relationships 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 the Asia Pacific region and supported the development of the Pan Asia Consortia for the Treatment of ALS (PACTALS) and the Australian MND Registry.

> Read more about our achievements

 
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Chief Executive Officer Report


MND Australia is the national voice representing our members, the six State MND Associations, and all Australians who share our vision of A World without MND. During 2017/18 we have worked to increase our focus on influencing the health, disability and aged care sectors to improve the lives of people living with MND and their families. At the same time we have worked to strengthen our research activities to communicate MNDRIA funded research outcomes and engage with the community to guide our future research strategy. 

Communications and campaigns are key to advancing awareness and understanding of MND and in supporting our influencing priorities as outlined in our MND Action Framework. A grant from Tata Consultancy Services enabled us to develop a fully mobile optimised MND Action website to support and grow community campaigning. In addition we established a new Campaigns and Communications role and welcomed Alana Maytum to this role in April. Her appointment has enabled us to develop community campaigning.
 
In May we launched the new MND Action website and the Make Aged Care Fair campaign. This campaign seeks fast track access to Home Care packages for those people diagnosed with MND when aged 65 and older who are not eligible for the NDIS. Next steps include the launch of an MP look up tool and the recruitment of volunteer campaign champions in partnership with MND Victoria.    

Whilst our first MND Action campaign is focused on Aged Care we have continued to work with members to champion the rights of people living with MND eligible to access the National Disability Insurance Scheme (NDIS) as the speed of the roll out gathers pace. Specifically we have highlighted the urgent need for systemic changes to address the slow and stressful planning process for people with rapidly progessing conditions like MND in light of their complex and changing needs and limited life expectancy.

We have continued to work proactively with the national disability insurance agency (NDIA) to provide information, support and cost effective solutions. This has led to the development of the first disease specific practice guide to assist the NDIA planners and local area coordinators develop plans for people with MND in a timely manner. The NDIA are now working to develop MND Fact Sheets and training modules to highlight the complex nature of MND and the need to plan ahead and take progression into account.

> Read about other MND Australia accomplishments




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Executive Director Research report


The past year has seen some significant progress in our understanding and treatment of MND. Research supported by MNDRIA was featured in 31 papers published in peer-reviewed journals in 2017. The discoveries of a new gene implicated in causing MND in some people and a potential neurotoxin found for the first time in algal blooms in Australia, are just two of many recent research findings funded by MNDRIA.

Earlier this year, research led by Drs Derik Steyn and Shyuan Ngo from the University of Queensland revealed increased energy use or metabolism in people with MND is linked to faster disease progression and reduced lifespan. Exactly why this happens is unclear. The researchers hope this discovery will help to manage disease progression in the clinic and open up new avenues for improving patient outcomes through treatments that specifically target energy use. Research published by Associate Professor Brad Turner and colleagues in the prestigious journal JAMA Neurology in March investigated neuroinflammation in ALS/MND. The study found cells in the immune system known as regulatory T cells have a protective effect and concluded strategies aimed at enhancing the regulatory T cell population could prove therapeutically useful. 


The May Federal Budget committed $241 million to list the drug nusinersen (marketed as Spinraza) on the Pharmaceutical Benefits Scheme (PBS) from 1 June for the treatment of a particular type of MND known as spinal muscular atrophy (SMA). SMA is the number one genetic cause of death in infants, affecting 1 in 6,000 children. Abnormalities in the SMN1 gene cause motor neurones in the spinal cord and brainstem to die. Spinraza is the first and only treatment of its kind to be listed on the PBS for Type 1, Type 2 and Type 3a patients under the age of 18. Notably, MNDRIA’s Beryl Bayley Postdoctoral Fellow Dr Michelle Farrar from the University of NSW played a key role in establishing an expanded access program to enable patients with the most severe type of SMA access to the unapproved treatment while it was under review by the Therapeutic Goods Administration. The Budget also included an investment of $20 million for pre-conception screening for rare and debilitating birth disorders including SMA. This will provide funding and support for patients who face difficult choices in starting a family. Importantly, we hope this will extend to people with a family history of MND looking at starting a family.

> Read more





 

2017 – 2018 highlights


MND Australia is the national voice representing our members, the six State MND Associations, and all Australians who share our vision of A World without MND.

MND Australia, and its research arm the MND Research Institute of Australia, work to promote, influence and advance MND care and research to improve the lives of people living with MND.

We do this through:

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Communicating and campaigning


During 2017/2018 we:
  • Grew online and digital communications to advance awareness and understanding of MND
    • Developed a fully mobile optimised website to support community engagement in MND campaigns
    • Launched the MND Action website in MND Week
  • Strengthened campaigning to improve access to health, disability and aged care services for people living with MND
    • Updated the MND Action Framework  to guide campaigning
    • Launched the Make Aged Care Fair campaign 

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Advocating


During 2017/18 we:
  • Built on 10 years of influencing for timely access to the NDIS for people diagnosed with MND when aged under 65
    • Continued engagement with the NDIA to develop the first disease specific Practice Guide for planners and local area coordinators
  • Worked to influence aged care policy to ensure equitable access to timely needs based care and support for people diagnosed when aged 65 and over
    • Petitioned the Aged Care Minister on behalf of people aged 65 and over for fast track access to aged care services and support   




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Research



During 2017/18 we: 
  • Awarded more than $3.31 million to fund 28 new research projects commencing in 2018
  • Launched the $25 Million, 25 Milestones: Changing the future of motor neurone disease report to mark 30 years of building and sustaining MND research in Australia. “Reading through the $25 Million, 25 Milestones report, I didn’t realise so much has changed in this area of neurology – it really is impressive. Many parts of the puzzle are being put together and this publication highlights just how much MND researchers have achieved,” Assistant Minister for Health, the Honourable Dr David Gillespie MP.
  • Delivered the 13th MND Australia Research Conference to foster information sharing and collaboration between Australia’s leading researchers
  • Consulted the community to inform the MND Australia Research Strategy 2018 to 2021

 


Educating

During 2017/18 we:
  • Connected the MND Community with MND researchers at the 3rd MND Connect meeting in Sydney
  • Developed and updated a range of resources to inform the community about MND care and research


 









Engaging internationally 


 During 2017/18 we:

  • Contributed to the International Alliance of ALS/MND Associations as a Chair and as a board director.
  • Engaged with developing countries in Asia Pacific as a representative of the International Alliance of ALS/MND Associations to share resources, information and expertise.

 
 
 


treasurer report


MND Australia received a total income of $1,267,757 in 2017/18 compared to $1,422,073 received in the previous 12 months. This income includes $415,223 received as research contributions from MND Victoria which was transferred in full to our research arm the MND Research Institute of Australia (MNDRIA).

Funds received support us in our mission to promote, influence and advance MND care and research. Our members, the State MND Associations, provide funds via membership fees to support MND Australia and the work we undertake nationally 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 and in keeping the national voice of MND loud and strong. Income from donations in 2017/18 was in line with the previous 12 months.

MND Australia is in a positive financial position at year end with a net surplus of $156,112.

MND Australia provides administrative support to the Australian MND Registry by processing registry related income and expenses. Registry funds are administered in a registry account within MND Australia’s MYOB accounting system.
 

> Read more

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Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity

 

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