Annual review 2017 – 2018

 

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

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.

 

This Global day, June 21, MND Australia, NSW and Victoria headed to Canberra to meet with key decision makers to discuss the health, disability and aged care needs of people living with MND and their families. Once again we invited federal MPs and Senators to wear a blue cornflower in Parliament 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.

Research funding through our research arm the MND Research Institute of Australia (MNDRIA) over the last 30 years has contributed to the development of the research workforce in Australia, many publications and key milestones. This year thanks to many loyal donors and supporters we were able once again to provide over $3 million to fund 28 new grants. In 2017/18 we invested in building our capacity and resources to communicate research outcomes to members and the wider MND community and to develop an effective research strategy for the next three years.
 
Each year we organise the national MND Australia Research Conference to showcase research funded by MNDRIA. In November the 13^th National MND Research Conference was held in Sydney. At this meeting we launched the $25 Million, 25 Milestones: Changing the future of motor neurone disease report and honoured the contribution of Janet Nash for her dedication and extraordinary contributions to building and sustaining MND research in Australia over the last 12 years. In addition we hosted the 3^rd MND Connect meeting to inform the wider MND community about the latest research. We thank Shyuan Ngo and Derik Steyn for their support to ensure the continued success of this meeting.
 
Engaging internationally through the International Alliance of ALS/MND Associations and attendance at the international meetings has remained a key focus over the last 12 months. At the Alliance AGM in December 2017 I stepped down as the Chairwoman of the Alliance after four years in the role and David Ali was elected as a board director. His appointment continues a long history of Australian contribution to the Alliance board. MND Australia engagement in the Asia Pacific region has continued as we remain committed to supporting the development of new and emerging ALS/MND support organisations in the region and the continued growth and development of the Pan Asia Consortia for the Treatment of ALS/MND (PACTALS).  

As always there are many people to thank. Firstly I would like to thank and acknowledge the contributions of Rachel Rizk, who left us in February after more than five years, and Dr Stephanie Williams who left in June to pursue her passion for writing. A heartfelt thank you to our current team and volunteers who work tirelessly with passion and commitment to deliver our core activities to improve care and support and move us closer to our vision of a world without MND.

I would especially like to thank the many consistent and loyal donors, new supporters, sponsors, social media followers and subscribers who are vital in supporting the work of our small team.  Finally I thank our President David Ali, the board and member associations for your continued support, guidance and dedication to the MND cause.

Until there is a cure there is care and I look forward to continuing to work collaboratively with the Board, staff and members to advocate for a fair and equitable care system; maintain significant funding for the best research to ultimately stop MND and keep the voice of MND strong nationally and internationally.
 
Carol Birks - Chief Executive Officer

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.

 

We are very grateful to everyone who took the time to complete the MND Australia Research Priorities Survey. This consultation fed into the development of MND Australia’s new research strategy for 2018 - 2021 Investing in innovation, Partnering for progress. We certainly learned a lot from participants. Overall, we found MND Australia’s current research strategy aligned well with the views expressed in the survey. A comprehensive research program has supported a range of research from understanding the causes of MND, to finding potential treatments, improving diagnosis, conducting clinical trials and improving the healthcare of people with MND.

We noted strong community support for promoting collaboration and will be increasing our focus on strategic partnerships where we can while continuing to encourage innovation and building the capacity of the MND research workforce. The success of the NHMRC Partnership Grant application MND: Patient-centred care for a progressive neurological disease - evidence driving policy is hopefully the first of many strategic partnerships (see cover story). People with MND and their families are front and centre of the initiative, which will connect important clinical information and inform policy.
 
An analysis of MNDRIA’s achievements to date was an essential part of developing MND Australia’s new research strategy. MNDRIA was extremely proud to launch the $25 Million, 25 Milestones: Changing the future of motor neurone disease report at the 13th MND Australia Research Conference in November 2017. This landmark report detailed 25 high impact, MNDRIA- funded advancements. Each milestone is another step forward in defeating MND.
 
We cannot thank enough our donors, supporters and volunteers who enable MNDRIA to support world-class high quality MND research. Because of you, MNDRIA is making a significant difference. Every dollar of each donation goes to research. Continued investment in Australian scientists at the forefront of MND research is vital to understanding the causes, developing effective treatments and finding a cure for MND. Our new research strategy is in place and our vision is as clear as ever. Slowly but surely we are turning the tide on MND. Together, we will prevail.
 
Stephanie Williams, Executive Director of Research

 

While MND Australia’s income, apart from membership fees, is dependent on year to year donations, operational expenditure is closely monitored and managed.
 
In 2017/18 we invested in growing staff to better support research operations and advocacy campaigning. Despite this investment, expenditure was less than the previous year and once again administration costs have been kept to a minimum. Staff costs relate to delivering our core objectives of advocating for the best care and support for people impacted by MND, raising awareness, developing and providing trusted information, delivering MND conferences and funding the best research.
 
All funds received by MND Australia specified for research are passed on in full to our research arm, The MND Research Institute of Australia (MNDRIA), to fund vital research.
 
All donations received by MNDRIA are directed to fund research. A small administration contribution is transferred to MND Australia from bank interest income to offset some of the operational costs of running our research arm. Funds received by MNDRIA in the financial year 2017-2018 were $2,989,892. In 2017 the board approved $3.31 million dollars to be available for allocation to new research grants commencing in 2018. Significantly this is the third year we have been able to allocate over $3 million at the annual grants allocation meeting for new grants commencing the following year.
 
Once again we sincerely thank our members for their positive engagement with their national organisation, the many donors and supporters for their generosity, and the people with MND past and present who inspire their communities to donate, raise funds and leave bequests. Your support is vital to continuing our work as the only national MND organisation in Australia working to improve care now and move us closer to a world without MND.
 
David Lamperd, Treasurer.
Audited financial statements for MND Australia and the MND Research Institute of Australia are available on request.