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President's report
We will always remember 2014 as a momentous year when the Ice Bucket Challenge catapulted ALS/MND into the global spotlight. As the icy water spilled and the donations rolled in, a sense of hope spread across the ALS/MND community. The Ice Bucket Challenge was a true turning point, providing momentum behind many of MND Australia’s accomplishments during 2014–2015 and shaping the planned endeavours outlined in our new Strategic Plan 2015–2018.
The wonderful generosity of more than 60,000 Ice Bucket Challenge donors was put to immediate use:
• Over $1.3 million is being used to enhance the care and support services provided by our members, the state MND associations
• Of the funds donated to the MND Research Institute of Australia (MNDRIA), over $1 million is supporting a three-year project grant and $100,000 is providing start-up funding for Australia’s participation in an international genetic study on sporadic MND
• Several national priorities have been brought forward including supporting the further development of the Australian MND Registry. The recent employment of a dedicated manager will improve processes and the subsequent collation of information about Australians living with MND.
> Read about other MND Australia accomplishments
We continued to work steadily with the state MND associations to manage the impacts of the roll-out of the National Disability Insurance Scheme. Through submissions, meetings and our MND Global Day morning tea at Parliament House in Canberra with the then Prime Minister and other MPs, we engaged with policy makers to ensure that they understand the complex, progressive needs of people living with MND.
It is the personal stories of people touched by MND that are often at the heart of awareness campaigns. During MND Week, MND Australia’s national awareness campaign revealed the reality of living with MND through the eyes of young father, Adam Regal.
MND again hit the headlines when AFL legend Neale Daniher announced that he has been diagnosed with the disease. Australians responded with an outpouring of respect and support. On the back of the Ice Bucket Challenge, Neale Daniher along with the Cure for MND Foundation launched “Big Freeze at the G”, which raised national awareness and an astounding $2.41 million for MND research. $1.5 million of these funds was allocated to MNDRIA in August 2015. MND Australia continues to work closely with Cure for MND to ensure that money for research is allocated to only the best MND researchers. We are also working hard to form a new care partnership to help the estimated 1900 Australians living with MND.
Other highlights of activities during the year included the Board reviewing its governance, structure and policies to better support our member organisations, and promoting the MND Charter and five rights of people living with MND to politicians to highlight the needs of people living with MND.
Our accomplishments would not be possible without the commitment of our Board of Directors and the leadership of National Executive Director of MND Australia, Carol Birks. I thank the passionate, hard-working staff and extend my gratitude to our supporters, whose invaluable support enables us to continue to influence policies and services at a national level and to advance research to ultimately end MND.
David Ali, President of MND Australia
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National Executive director'S REPORT
It has been an incredible year for MND. In August we were taken completely by surprise as the Ice Bucket Challenge phenomenon took hold. For the first time people living with ALS/MND had a voice and the global spotlight was on this disease. It is estimated that worldwide the Ice Bucket Challenge raised over $220 million (US)!
When the Ice Bucket Challenge began to gain momentum in Australia, our small team pulled out all stops to keep up with and leverage from this once in a lifetime opportunity. The impact of the Challenge had a flow on effect increasing interest from the wider community. In March, in response to the increased research grant funding and administration, we welcomed Peter Simpson-Young to the team as Research Officer.
National advocacy is a key role for MND Australia and throughout the year we have worked with members to respond to calls from the Federal Government for feedback on the development of the National Disability Insurance Scheme and the aged care reforms to promote the needs of all people living with MND.
The MND Week Call to Action in May focused on the impact of the aged care reforms on the 50% of people diagnosed with MND when over the pension age. The campaign called on Governments to make the system fair for all people with MND.
> Read full report
A national MND awareness campaign ran throughout May spanning TV, radio, online as well as an in store promotion through corporate sponsor, Harvey Norman. This professionally created campaign revealed the reality of living with MND and appealed to the public to put a price on the ability to perform everyday tasks: “Put a Price on it. That’s your donation.”
On 22 June MND Australia commemorated Global Day with a morning tea at Parliament House Canberra, hosted by Alex Hawke MP. This event helped to promote the International Alliance of ALS/MND Associations ALS/MND without Borders campaign and provided the opportunity to heighten awareness of MND care and research among parliamentarians. The former PM the Hon. Tony Abbott met with attendees and highlighted his personal connection with MND and the Government's ongoing commitment to MND research. The morning tea also provided the opportunity to present to parliament an updated petition of over 2600 signatures to support the ongoing 5 Rights of People with ALS/MND campaign.
MND Australia strives to ensure that health, disability and aged care professionals involved in the care of people living with MND have access to up-to-date and trusted information. During the year our website specifically designed for professionals, MNDcare, was further enhanced to be fully mobile accessible. In September MND Queensland hosted the 7th National MND Conference on the Gold Coast. Feedback from delegates confirmed the value of this biennial event to a wide range of professionals.
The Ice Bucket Challenge provided a huge boost to research in Australia and around the world. Funds received for research generally have continued to grow with a subsequent increase in high quality grant applications. Our 2015 – 2018 research strategy anticipates continued growth and has set the bar high with the aim to grow donations to the MND Research Institute of Australia (MNDRIA) to $4 million per annum by 2018.
We are grateful to the Board and member associations for your continued support and dedication to the MND cause. Thank you to everyone who helped to make 2014 a turning point for ALS/MND.
Carol Birks, National Executive Director of MND Australia
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YEAR IN REVIEW
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As the Icy water continued to fall ...
• Our Facebook fans grew from 2,700 to over 7,000
• Our Twitter followers grew from 980 to over 1,200
• Over 5,000 people subscribed to MND Australia's enewsletter
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And here are some of our other accomplishments from 2014/15 ...
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We revamped MNDcare – MND Australia's evidence based and best practice website for health, disability, aged and community care professionals. The new website is now easier to use from any location or mobile device. Take a look: www.mndcare.net.au
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It was a record-breaking year for MND research – $3.62 million allocated to researchers in 2015 to fund new grants
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Executive director research report
Since the inception of the Motor Neurone Disease Research Institute of Australia (MNDRIA) in 1984, the focus has been to fund only Australia’s best MND researchers in their quest to better understand MND. While there have been several significant changes and new initiatives during 2014–2015, the commitment to changing the future of MND is unwavering.
The ALS/MND Ice Bucket Challenge 2014 marked the beginning of a new chapter for MND research across the world. In Australia, $1.05 million of Ice Bucket Challenge donations enabled MNDRIA to fund its first three-year research project – the Sporadic ALS Australian Systems Genomics Consortium (SALSA-SGC) – to be led by Professor Naomi Wray of the University of Queensland’s (UQ) Queensland Brain Institute and Associate Professor Ian Blair of Macquarie University. This is the largest collaborative MND research project to be undertaken in Australia.
Additionally, Associate Professor Blair was awarded the MND Ice Bucket Challenge Grant-in-aid as start-up funding for Australia’s participation in the largest international genetic study of sporadic MND, called Project MinE.
> Read about other research accomplishments
In October 2014 the Research Committee elected Prof Matthew Kiernan (Bushell Chair of Neurology at the University of Sydney’s Brain and Mind Centre) as the new Chairman of the MNDRIA Research Committee. Prof Kiernan takes over from Prof Dominic Rowe who was Chairman from 2004–2014. Thank you to Prof Rowe for passionately steering the Research Committee and being instrumental in developing the growth and governance of MNDRIA.
Behind the growth of MNDRIA are loyal and passionate supporters – the state MND associations, donors and bequestors. Our heartfelt thanks to everyone who donated to MNDRIA and enabled us to award $2.57 million for 25 new grants in 2015.
New MNDRIA named grants for 2015 are the Cunningham Collaboration Grant, Angie Cunningham Laugh to Cure MND Research Grant, Ted Dimmick Memorial Grant and Bob Delaney MND research grant. All of these grants are the result of the tenacious efforts of dedicated people with diverse fundraising campaigns that have enabled funding of additional research projects. A very generous bequest provided funds for the first of many three-year Beryl Bayley MND Postdoctoral Fellowships which will be awarded annually until all the bequest funds have been expended.
I would like to make special mention of the zo-ee Foundation for its support over the last 10 years. Their final Motor On fundraiser was held earlier this year, pushing their fundraising total to over $600,000. What a wonderful result from this young, energised team – thank you.
Looking ahead, MNDRIA has devised a new research strategy with an ambitious goal to double research spend by 2018. With the ongoing commitment of our supporters, the guidance of our Research Committee of pre-eminent MND experts and the ingenuity of Australia’s researchers, we are confident that this goal will be realised.
Janet Nash, Executive Director Research of MND Australia
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The 2014 round of funding attracted a record 92 grant applications from researchers across Australia. The MNDRIA awarded $2.57 million to new MND research projects commencing in 2015.
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The Ice Bucket Challenge also provided a boost to MND care and support and opened up new doors
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Inspired to continue the momentum of the Ice Bucket Challenge, Bernice Atlee who is living with MND enlisted the pro bono support of branding, market research and advertising agencies, filmmakers and a national sponsor to create and broadcast MND Australia's first awareness campaign to span TV and radio.
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To mark ALS/MND Global Day 2015, MND Australia held a morning tea at Parliament House in Canberra, hosted by Alex Hawke MP, to promote MND care and research and advocate for the rights of people living with MND.
We are grateful to the Prime Minister at that time, Hon Tony Abbott, Warren Ensch MP, John Alexander MP, Senator Nova Peris, Stephen Jones MP, Angus Taylor MP, Nola Marino MP and the advisor to Senator Mitch Fifield for joining us and for supporting the MND Charter.
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CEOs and staff from state MND associations are in close contact with National Disability Insurance Scheme (NDIS) staff at launch sites. Feedback from the state MND associations assists MND Australia in responding nationally. We are focused on ensuring that people with MND entering the NDIS receive adequate, timely and well-coordinated care that can respond to rapid change. Read MND Austraila's submissions that influence the policies that affect all Australians living with MND.
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And huge thanks to our passionate supporters:
• Commonwealth Bank Enterprise Services team
• Bernice and Rob Atlee
• The Works
• Zodiac Media
• Harvey Norman
• Brand Navigator
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Financials
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Treasurer'S REPORT
2014–2015 was an incredible year for ALS/MND worldwide due to the Ice Bucket Challenge. Associations globally understood their obligation to ensure that funds received were spent wisely and urgently. For MND Australia and the MND Research Institute of Australia (MNDRIA) the significant positive impact on donations allowed us to support the services provided by state MND associations, advance national projects and fund new MND research grants.
For MND Australia, a total income of $1,769,505 from unsolicited donations was received compared to $194,951 in the previous 12 months. The funds directed to MND Australia for care and support have enabled us to bring forward key national strategic objectives related to national advocacy, information, awareness and research. However the provision of direct services is a priority and the majority of the funds have been distributed to state MND associations to enhance and support the vital services they provide to people living with MND and their families.
In 2014, the Board approved $2.6 million to be available for allocation to new research grants commencing in 2015 and $2.57 million was subsequently awarded. In 2015, an additional $1.05 million was awarded to fund the MND Australia Ice Bucket Challenge Grant.
We are extremely pleased that this is the third year we have been able to allocate over $2 million in annual grants. We are hopeful that all research donations received up to 28 August 2015 will enable us to again increase funding for new grants for the most talented and best researchers in 2016. In our Research Strategy we have set the goal of allocating $4 million per annum by 2018. Thanks to many generous and committed donors, we are on track to achieve this ambitious goal.
MND Australia is in a very positive financial position at year end with a surplus of $143,522. MND Australia’s income is dependent on year-to-year donations, (apart from membership fees) and operational expenditure continues to be closely monitored and managed. This year’s expenditure increased over the previous 12 months due to the increase in donations related to the Ice Bucket Challenge and the subsequent allocation of those funds to our member state associations and special projects as outlined elsewhere in this report. All funds received by MND Australia specified for research are passed on in full to MNDRIA.
Once again, we sincerely thank all our donors for their continuing generosity. Your donations are vital in supporting our work to help people impacted by MND live better for longer and helping us to grow MND research in Australia as we work towards our vision of a world without MND.
Lara Kirchner, Treasurer of MND Australia
Audited financial statements available here.
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