Annual review 2015–2016







 
Annual review 2015–2016







 



David Ali, President MND Australia
 

President Report


Motor neurone disease costs. According to a Deloitte Access Economics Report commissioned by MND Australia, the total economic cost of MND in Australia was $2.37 billion in 2015. This enormous financial cost is matched by the spiralling physical and emotional burden experienced by people living with MND, their family and friends.

The Deloitte Access Economics Report has enabled us to meet with several key decision-makers from the three major political parties to seek their commitment of MND care and research, as outlined in the MND Australia National Action Framework. We will continue to meet with Ministers and other influencers to advocate for a fairer system for all people living with MND. In particular we will lobby 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.

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

 



Carol Birks, National Executive Director of MND Australia
 

Chief Executive Officer Report


Collaboration, knowledge and tenacity are vital to optimising quality of life of people with MND and moving us closer to effective treatments to defeat MND.  

In collaboration with our members – the State MND Associations – during 2015–2016 MND Australia advocated for the rights and needs of people impacted by MND:

  • Our first Deloitte Access Economics report on the economic impact of MND was launched at a Parliament House event, hosted by our friend Alex Hawke MP. The launch facilitated discussions with parliamentarians and advisors about ways in which policies could better serve the needs of people living with MND.​
  • Informed by the Deloitte report’s findings we developed a National MND Action Framework to seek political commitment for MND action to improve the lives of people with MND and their families and to increase government investment in MND research. 

> Read about other MND Australia accomplishments




MND Australia accomplishments 2015–2016

2015–2016 highlights



MND Australia works to defeat MND by raising national awareness, advocating for the rights of people living with MND, providing trusted information and promoting the best research. Main accomplishments in each of these core areas during 2015 – 2016: 
 
  • Tim Minchin (comedian/actor/musician) and the Sydney Symphony Orchestra performed The Fading Symphony, viewed by 460,000 people. MND Australia won best Social Media Campaign of the Year for The Fading Symphony at the Australian Not-For-Profit Technology Awards 2016. 
   
  • MND Australia commissioned the Deloitte Access Economics report Economic analysis of MND in Australia to ascertain the cost of the disease and enable the MND community to better advocate for people impacted by MND.
 
  • MND Australia's research arm, the MND Research Institute of Australia (MNDRIA) is funding a record 42 new research grants in 2016: $3.32  million from MNDRIA donations awarded at the Grants Allocation Meeting in 2015 and $1.75 million contributed by the Cure for MND Foundation. An additional grant of $1 million funded by John and Betty Laidlaw was awarded in early 2016.

 

"When you receive a diagnosis of MND, money is the last thing on your mind. But along with the relentless physical and emotional effects on yourself and loved ones are the financial costs: early retirement, medical appointments, hospitalisations, treatments, equipment, wheelchair transport, personal care  ... There is support from the state MND associations and government, but it all adds up."

Kirsten Harley, MND NSW Board member living with MND

Deloitte Access Economics report on MND costs






Janet Nash, Executive Director Research



Executive Director Research report


The past year was marked by a truly magnificent gift to the MND Research Institute of Australia (MNDRIA) from John and Betty Laidlaw.

Our heartfelt thanks to the Laidlaws for their generous $1 million donation and for moving us closer to a world without MND.The Betty Laidlaw MND Research Grant was awarded to University of Melbourne neuroscientist Dr Peter Crouch to lead a multicentre team working on a drug called copper-ATSM as a potential treatment for MND. 

During 2015–2016, research highlights included making inroads in understanding the genetics of MND. Research supported by MNDRIA and led by Dr Kelly Williams and Associate Professor Ian Blair at Macquarie University, found a new genetic cause of MND and frontotemporal dementia

Three new genes known as C21orf2, MOBP and SCFD1 were linked to MND, and a fourth gene, NEK1, has been confirmed as being associated with MND. The findings are the result of a huge international effort that was partly funded by MNDRIA.

> Read about other MND research advances




The Laidlaws with Carol Birks and Janet Nash

The Laidlaw's $1 M gift to research


The journey to establish the special $1 million Betty Laidlaw MND Research Grant began in 1922, when John Laidlaw’s father, David, started making work wear in the garage of his parents’ home in Melbourne. By the 1930’s, Hard Yakka was an iconic name synonymous with work wear in Australia. John eventually took over from his father and expanded and consolidated the company, which he sold in 2007. John and his wife Betty have a long history of philanthropy, supporting many projects for homeless and disadvantaged people. This tradition is being continued by their family.

Betty Laidlaw has been living with primary lateral sclerosis, a slowly progressive form of MND for over 30 years. She can no longer walk, use her arms or speak and sometimes she does not recognise her husband. John is devoted to Betty who lives at home with 24/7 care. While John has been kindly giving what he calls small contributions to MND Victoria, a meeting with former AFL player Neale Daniher who is living with MND helped John to realise he could make a significant difference to MND research.





We sincerely thank all donors for their generosity. Your donations are vital in supporting our work as the only national MND organisation working to defeat MND.

MND Australia is in a very positive financial position at year end with a net surplus of $108,646. While MND Australia’s income, apart from membership fees, is dependent on year to year donations, operational expenditure is closely monitored and managed. 85% of staff cost relate to delivering our core objectives related to advocating for the best care and support for people impacted by MND, raising awareness, developing and providing trusted information and funding the best research. All funds received by MND Australia specified for research are passed on in full to MNDRIA. 

Lara Kirchner
Treasurer 




 

finances


Revenue and Expenses 2015–2016
 

Related links

 

Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity

 

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