Annual review 2014–2015

  CEOs and staff from 
MND Australia's president, David Ali takes the Ice Bucket Challenge 2014

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

National Executive Director, Carol Birks takes the Ice Bucket Challenge 2014

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




YEAR IN REVIEW


 
Ice Bucket Challenge 2014 timeline
Staff at the Menzies Institute for Medical Research, University of Tasmania.

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
 



And here are some of our other accomplishments from 2014/15 ...


 
7th National MND Conference,
23 delegates take the Ice Bucket Challenge at the 7th National MND Conference
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 
 


 
It was a record-breaking year for MND research – $3.62 million allocated to researchers in 2015 to fund new grants 


 
National Executive Research, Janet Nash takes the Ice Bucket Challenge 2014

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

MND researchers 2014
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.
 
Ice Bucket Challenge funds MND research.


 
The Ice Bucket Challenge also provided a boost to MND care and support and opened up new doors


 
Care and support spend using Ice Bucket Challenge donations.
Adam Regal, the face of the Put a Price on it to END MND campaign

 

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.
Jameela Walker whose mother died from MND with former Prime Minister Tony Abbott at Global Day morning tea 2014

 

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.


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.   


 
Thank you to donors


And huge thanks to our passionate supporters:

•  Commonwealth Bank Enterprise Services team
•  Bernice and Rob Atlee 
•  The Works
•  Zodiac Media
•  Harvey Norman
•  Brand Navigator

 
 


Financials

 


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. 
 
 

Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity

 

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