Until there's a cure ... there's care

For the year ended 30 June 2017



Working towards a world without MND.

Mission Statement

Provide and promote the best possible care and support for people living with MND.

“People living with MND” includes people who have been diagnosed, those yet to be diagnosed, carers, former carers, families, friends, workmates and any other person whose life is, or has been, affected by a diagnosis of MND.


  1. To provide the best possible support for people living with MND.
  2. To gather and share advice on living with MND.
  3. To create and foster a caring link between people living with MND by providing opportunities for interaction.
  4. To raise awareness of MND and the needs it creates.
  5. To develop and maintain relations with MND Associations within Australia and overseas.
  6. To foster and maintain links that can help us achieve our mission.
  7. To encourage and support research initiatives and disseminate knowledge of research
  8. To work towards best practice in achieving our mission.


  • Our service is to people living with MND, above all else. We do not undertake anything that does not contribute to improving quality of life for people living with MND.
  • We respect and value the contribution made by each and every member of the MND community and give full consideration to their contribution.
  • We support, encourage and value innovation that improves opportunity and quality of outcomes.
  • We share absolute integrity and are ethical in our practices.

The Cornflower

The blue cornflower is the symbol of hope for people living with MND – hope for finding the cause; hope for development of treatments, and for cure. The cornflower represents positive hope for the
future – a future without MND.


The Motor Neurone Disease Association of Victoria is an Association incorporated under the Associations Incorporation Reform Act 2012 (Victoria) as amended – Registered Association A7518. It is a member of the Motor Neurone Disease Association of Australia (Inc), Palliative Care Victoria (Inc), Victorian Council on Social Service (VCOSS) and NDS (National Disability Services) Inc, peak bodies in MND, palliative care, social services and disability services respectively.

MND Victoria is a registered National Disability Insurance Scheme (NDIS) provider, Number 53996591, for a range of specified supports in Victoria, New South Wales and Tasmania.

The Association’s activities are governed by a constitution approved by the members and registered under the Associations Incorporation Act 1981 (as amended).


The Association is governed by a body called the State Council which is elected by and from the members of the Association.

State Council is made up of twelve positions. Under the terms of the Association’s Constitution, six positions on State Council are identified for people living with MND, carers, former carers or close
associates, such people having a “personal association with MND”. Members of the Association who wish to make a contribution to people living with MND through effective governance of, and policy direction for, the Association nominate for and are elected to the other positions.

State Council 2016/2017

  • David Lamperd – Chairman*
  • Katherine Barnett – Vice Chairman*
  • Jeremy Urbach – Treasurer*
  • David Ali
  • Duncan Bayly*
  • Chris Beeny
  • Barry Gunning
  • Jodie Harrison*
  • Angeline Kuek
  • Wayne Pfeiffer*
  • Chloe Williams
  • Andrew Marshall * (resigned September 2016)
  • Eric Mayne * (resigned April 2017)

(Names marked * have a personal association with MND)

Positions on State Council fall vacant by rotation, with four (4) positions becoming vacant each year. Nominations are called via the Association’s newsletter – MNDNews – and elections are conducted and the results announced at the Annual General Meeting. State Council identifies skills, attributes and capacities that will assist it in fulfilling its functions of governance and policy setting, and recruits individuals to fill casual vacancies in accordance with the Constitution. A review of skills and experience was conducted in 2015/16 and a skills matrix developed. This identified a need to improve the gender balance on State Council. It was agreed to advertise vacancies and recruit appropriately qualified people to State Council. This recruitment was concluded in 2016/17 with the appointment of three new State Councillors. Face to face meetings are held on the third Monday of each month. This year, Council met ten times in formal session. The need for meetings in December and January is determined from time to time based on the issues to hand.

The Association’s activities are conducted in accordance with the Victorian Department of Health and Human Services’ Standards, and ISO 9001 in relation to management and governance, through the Association’s Quality Management System. State Council has developed governance policies which supplement the Constitution in the governance of the Association. These are complimented by operational policies, implemented by the Chief Executive Officer, which guide the operations of the Association. The Quality Management System, governance and operational policies are available for perusal at the Association’s office, and copies of specific policies related to issues of interest or concern of members or clients can be provided on request.

State Council determines the overall direction, operational parameters and establishes policy for the Association through its governance responsibilities and processes. It also manages the risk
profile of the Association in investments and operations. It monitors and reviews the performance of the Chief Executive Officer. The Chief Executive Officer, in consultation with staff, is responsible
for day-to-day management and operations of the Association, achievement of Association and State Council objectives, and monitors and reviews the performance of staff.

An annual agenda of key tasks is maintained. A wide range of issues are considered and reviewed by State Council throughout the year. These include analysis of the environment the Association is operating within; strategic direction of governments, both State and Federal; relationships with MND Australia; monitoring of Association performance, including financial management, service delivery, new service options and strategic planning and initiatives. Budget, income and expenditure analysis and review is undertaken monthly, with the budget approved in June each year for the following financial year. These issues are underpinned by the needs of people living with MND, both now and in the future. State Council closely monitors reports on occupational health and safety (OH&S) – a key responsibility we hold is to ensure that volunteers and staff work in a safe and protected environment.

State Council has in place a Risk Strategy and Risk Assessment Schedule, which is reviewed annually or as required.

OH&S is a major component of the Association’s Quality Management System. A program of activities regarding OH&S is undertaken throughout the year, including planned evacuation and fire
safety actions.

Investment of Association assets is monitored and controlled by State Council through the Finance, Audit and Investment Committee. State Council has established an appropriate risk profile for investments and purchases external advice from an independent investment advisor.

State Council has reaffirmed the Association’s eligibility to retain its status as a public benevolent institution (PBI), deductible gift recipient (DGR) and tax concession charity (TCC). Retention is
essential for the Association to operate as a not for profit charity working for people living with MND and to raise funds from the public. The Association, through its CEO and Manager Fundraising, is a registered fundraising organisation in Victoria. Following accreditation against the Department of Human Services Disability Standards and ISO 9001, the Association is an Approved Disability Service provider and a registered provider with the National Disability Insurance Agency (NDIA). Review of compliance was undertaken in early 2017 and was successfully completed with no non-compliances recorded.

State Council has continued to monitor the provision of MND Advisor services to Tasmania.

Following the conclusion of the three-year project grant from a Victorian philanthropic trust, MND Victoria and MND Tasmania entered into a Memorandum of Understanding for MND Victoria to continue to provide Regional Advisor services in Tasmania, and MND Tasmania has agreed to contribute funds to support the project. In June 2014, MND Victoria was advised that it would be receiving funding from Tasmania Medicare Local for the delivery of care management services in Tasmania. Due to government policy change, a further application had to be made to TML, the new entity managing this funding, which was successful. Recruitment of a person to work in Tasmania from Launceston was successfully concluded in July 2015. Subsequent changes to Government policy has meant that this funding was withdrawn in December 2016. Discussions between the Association and MND Tasmania have resulted in a MOU to govern operations until December 2018, including applications for funding to support the service. In June 2017 the Association was advised that it had been successful in securing funding for a further year of service delivery from a philanthropic trust. Further applications will be made to support growth of the service beyond its current two days per week, and promotion of the MND Advisor to undertake coordination of support funded by the National Disability Insurance Scheme.

In addition, key projects that impact on both governance and management of the Association are considered, implemented and reviewed. A strategic planning review was undertaken in the second
half of the financial year and was awaiting finalisation of the MND Australia strategic plan, to ensure that the future direction of the national organisation is embedded in the State plan. Both strategic plans have now been finalised. The MND Victoria plan focuses on the implementation of the National Disability Insurance Scheme (NDIS) and ensures that the Association continues to do what people with MND need it to do, our relationships with our key partners and funders are maintained, development is innovative and creative, and our strategic direction is clear. We retain our focus on investing in research, with a clear target of improving funding for research into care and management of MND.

The full implementation of the NDIS will have a major impact on the delivery of services and support for people with disabilities, and on the Association. Since commencement in July 2013, the Association has had significant involvement in influencing the model of planning and service delivery. We need to ensure that people with MND not only receive the services they need now, but recognition is given to the needs that will emerge due to the progression of the disease. Thus far, we have most participants with MND receiving services from us. We continue to work closely
with MND Australia and its members, National Disability Services (NDS), the National Neurological Disease Alliance and the Victorian Acquired Disability Alliance, to influence the operational
structure of NDIS to ensure that people with MND have timely access to the best possible care and support from the scheme. We remain concerned about the exclusion of people who acquire a
disability over the age of 65 (pension age) and are working closely with MND Australia to influence changes to the Aged Care service system to ensure that aged care services are able to address
the needs of people with a disability, and especially those living with MND. As always, our focus is on the needs of people living with MND, supporting them to maintain control over their lives and
over the services they need and want.

From 1 July 2012, the Carers Recognition Act 2012 formally acknowledges the important contribution that people in care relationships make to our community and the unique knowledge that carers hold of the person in their care. MND Victoria upholds and actions the principles of the Carers Recognition Act 2012.


As at 30 June 2017, the Association has twenty two staff (22) staff, eleven (11) working full time and eleven (11) working part time. They deliver 18.95 EFT (effective full time) positions. Seventeen (17) positions are involved in direct service delivery for people living with MND (14.32 EFT), two in fundraising (1.73 EFT) and three in administration (2.9 EFT). The majority of time of the administrative positions is invested in supporting and underpinning service delivery.

Review of the MND Advisor, Tasmania role and funding options, resulted in a decision between MND Tasmania and MND Victoria to recruit a person living in Tasmania and to be based in Launceston. Selection for this position was concluded in June 2015 and the position staffed from July 2015.

Regular consideration is given to work load and work load management for all staff. The increase in numbers of people with MND registering with the Association has created significant pressure on
our MND Advisor team. State Council approved the creation and filling of an additional MND Advisor position which was filled in August 2017. A further two positions have been approved subject to workload assessment during the second half of 2017. The “Keeping Connected” program, to maintain and enhance contact with people living with MND and their carers, has proven to address the needs of those people with slower progressing MND and to maintain contact with others between MND Advisor contacts. Alternative service and support mechanisms are being reviewed, including the use of technology to undertake face to face visits without staff travelling. In addition, the significant changes to the disability and aged care systems continue to create difficulties in finding appropriate levels of case management and support for all clients outside the NDIS rollout areas. As indicated below, staff health is a key issue for the Association, and management of workloads is a major component of our response.

During the year staff attended conferences and gave presentations highlighting the Association’s work. These presentations are an excellent opportunity to highlight our practice, service development and the needs of people living with MND. All direct service delivery staff attended the National MND Support Services training day in Melbourne. The MND Support Services day is an essential meeting to promote peer support and to share service innovation, initiatives and development across Australia.

Staff training and development continues to be a key issue. The Association encourages staff to identify their own development and training needs, and provides a personal self-development budget of $500 per annum for each staff member. This is supplemented by training identified by the Association as beneficial and necessary, as well as requests for specific training opportunities that may fall outside the personal budget. For 2017/18 a dedicated budget for State Council training and development has been approved.

Staff health is important. Employees are the Association’s most valuable resource. To maintain personal health, all staff access funded counselling and personal support activities on a self identified needs basis. Externally facilitated group supervision has been maintained for MND Advisors to address issues that arise as part of their practice, and introduced for all other staff. Support opportunities are supplemented by internal practice, including supervision and debriefing, reflective group practice sessions and team meetings. During the year, two reviews of occupational health and safety compliance were undertaken. Issues identified during reviews are attended to with urgency. The Association continues to meet the gap in cost for influenza vaccination, and recommends that all staff avail themselves of this protection.


The Association secures funds from a wide range of sources to support its activities. The Association believes that a range of funding sources protects the Association’s activities in the event of a decline or reduction in any one source.

The Association has a three year Funding and Service Agreement with the Department of Health and Human Services (Victoria) (DHHS) which provides indexed funding for services purchased by
the government. This funding agreement expires in July 2018. The Agreement provides for appropriate levels of reporting on performance and activity. DHHS purchases Case Coordination/Case Management, Information and Equipment services from the Association on a recurrent basis. The Association also has a funding agreement with DHHS which purchases palliative care services from the Association, specifically to provide management of volunteers and a brokerage service for funding the MND Palliative Care Pathway Program, which provides inpatient and community based top up funding. The Association receives funding for the administration of this project.

During the year, funding related to those people over the age of 65 was transferred to the Commonwealth Department of Health and the Commonwealth Home Support Program. This will continue until 30 June 2019. Funding related to those under 65 who were participants in the rollout of the NDIS was transferred to the NDIA. Both these transfers were due to COAG (Council of Australian Governments) agreements in relation to the NDIS and responsibility for services.

The demand for a review of prices of services within the NDIS has been referred to the Productivity Commission. MND Australia, with input from state MND associations, has made a submission to
this review.

Funding was sought from and provided by a number of Trusts, philanthropic bodies and service clubs to support specific projects and underpin the operations of the Association.

Our F-IRE program (Fundraising – Independently Run Events) continues to grow, and is generating great interest and support. Competition for MND fundraising has resulted in a significant decline in returns from large group participation events organised by third parties where they can nominate the charity of their choice to receive any funds they raise. We continue to closely monitor fundraising costs, implement cost effective initiatives to raise funds, and invest in appropriate levels of staff to support all fundraising activities.

Support Groups undertook a range of fundraising activities, including selling merchandise and Christmas cards, to support the Association.

The Association undertakes donor acquisition and development activities. Two direct mail donor renewal campaigns are conducted at Christmas and at the end of the financial year to established donors. In parallel, our telemarketing company contacts telemarketing donors to report on our activities, our needs and to seek donor support. Both programs are successful, but we face an
ongoing struggle to build the donor database. We continue our efforts to identify and utilise effective donor acquisition strategies to grow our donor pool and donations given.

In autumn and spring we send our Donor Update to all donors who meet the criteria of having donated once in the previous two years. Donor Update is a communications tool to keep donors informed about what the Association is doing and how we invest their gifts to us in service delivery and research support. Content includes reports about specific activities, the Association’s work with people with MND, personal stories and alternative fundraising opportunities and events, such as bequests and “Walk to D’feet MND”. The Update continues to receive strong support from recipients, and is a key plank in our Donor Development program.

Throughout the year, the Association receives unsolicited donations from current and new donors. These come from many sources, including donations in–memoriam and in lieu of funeral flowers.
Unsolicited donations form the majority of our donor acquisition activities.

More and more people make a single donation to the Association, and do not respond to our offers to renew their involvement in the fight against MND. We need to convert these single donors to
regular donors and build their engagement with the Association to include future bequest income. We continue to investigate strategies to assist donor renewal. All donors receive appropriate receipts and a letter from the Association thanking them for their support. Where donors remain anonymous, receipts are held at the Association. The Association operates comprehensive donor management software to ensure that appropriate records are held of all donors and donations. The Association has policies and procedures in place to comply with privacy legislation.

The Association has an ongoing bequest development program aimed at assisting people to recognise the importance of the Association’s work by leaving a gift in their will. Our payroll deduction program and regular giving through Centaurea, the Association’s program of regular monthly giving, supplements this program. The MND Care Foundation continues its growth, with its policy to invest funds and distribute 80% of earnings to support care services, and the balance being invested to grow the fund. The Care Foundation is not a separate entity, and operates within the overall operations of the Association.

The Association undertakes merchandising and other fundraising activities through the volunteer Fundraising Committee. Sale of Christmas cards, clothing, cornflowers, cornflower cards, dogs
and other merchandise assist in supporting the Association.

‘Walk to D’feet MND’ continues to grow, and be a significant contributor to MND Care and Research. Proceeds are shared between MND Victoria, to deliver care and support, and Motor Neurone Disease Australia, for investment in research grants for scientists and other researchers.

The Association meets all costs of the Walk as part of its contribution to services and support and research into cause, treatment and cure of MND. We have developed a ‘Walk Kit’ which can assist
anybody to develop and conduct a ‘Walk to D’feet MND’ in their local area.

For the 2016 Melbourne Walk to D’feet MND, and we saw 2,000 people surrounding Princes Park in Walk to D’feet MND T-shirts. A goal to raise $150,000 was smashed – over $200,000 was
raised. The continued growth in participation confirms this is a really important event for the MND community, primarily to bring people with MND, their families and friends together, and to raise
funds. They see this as a way to show support for each other, the Association and for future generations. We continue to look at enhancing events and raising the bar for participation and
fundraising. Walks were also held in Bendigo and Geelong raising $34,786. The 10th Benalla Act to D’feet MND included a range of events including biking, walking and relay races, and raised
over $80,174, and taking their total to over $500,000 in the ten years – a fantastic effort. They also hosted the start of the Benalla stage of the Jayco Herald Sun Tour.

We encourage people to start a Walk in their region - they are an easy and fun way to generate community participation and raise awareness. The Association assists with on-line registration and
fundraising platforms, permits, promotion and Walk T-shirts.

Our first “international challenge event” was promoted in the second half of the financial year. The MND “Walk the Great Wall of China” has attracted 10 walkers who have been hard at work raising
funds for MND Victoria. As at 30 June 2017 they had raised $29,884 with a target of $50,000. The Great Wall walk will occur in September 2017.

Volunteer fundraisers conduct a number of events and activities to support the Association. These include golf days, tennis days, trivia nights, dinner dances, participation in walks and runs, collection of donations in lieu of gifts at significant birthdays, sell cakes, jams and other produce, and many other events. The Association supports these activities by providing cornflowers, donation materials, information kits, and other support. This is a growing part of the Association’s fundraising and we look forward to all approaches from people who wish to fundraise on our behalf. We need members and supporters to identify opportunities for the Association.

To assist people conduct their own activities, the Association has produced and maintained a Fundraiser’s Kit, which provides a wide range of information and advice on conducting a successful event. The Kit answers all of those basic questions that often inhibit the organisation of events. We have established relationships with mycause.com.au and everydayhero.com.au, online fundraising platforms that remove the worries about being sponsored for an event or collecting pledged donations. Both platforms allow people to create their own events, seek sponsorship, automatically send donors tax receipts for their contributions, and remove the hassles of chasing pledges.

To highlight some fundraising efforts of many:

  • Wandin Dressage event raised $4,000
  • Lizardos Fundraiser generated $6,820
  • Cox’s Bridget to Cox’s Place raised $7,317 from a bike ride
  • Drink Tea for MND at a number of locations raised $10,745
  • Simko’s Rock off MND raised over $141,000
  • Steve Wallis MND Research fund raised $21,274 at the Melbourne Air Show
  • Superball X raised over $90,000 for research
  • Bunnings Sausage Sizzles raised $3,650
  • Melfi – Through one man’s eyes raised $10,121

The Association effectively manages its resources and investments to generate funds. It has policies and procedures in relation to investments and risk profile, and appropriate mechanisms to seek advice and information from qualified and experienced advisors. Over $338,574 was generated through investment income, a sign of good and effective management of the Association’s cash resources and investments in a tough investment climate.


Corporate Social Responsibility has been a major thrust of government and philanthropy over the past few years. The Association has found it difficult to attract partners of this kind due to the difficulties in providing the “pay back” that seems to be a part of these relationships. We have continued our strong partnership with Vitality Brands Worldwide to fund and deliver “Take a Break from MND”. The extension of this project to now include people with MND in Tasmania and South Australia has been well received, and sets an elegant and effective example of the application of corporate support.

“Take a Break” is a minor capital funding program to provide small grants to families to give them a break from the impact of MND. It is designed to empower MND Advisors to make decisions and
provide the funding without review or recourse, respond to an urgent or emerging need created by MND in a family, and be simple and effective with no bureaucracy slowing down the process.
Funds are transferred electronically within 24 hours of the MND Advisors’ approval.

The Association benefits from corporate support through running and participating in events, as well as donations of financial and other support. Sixty seven companies supported the Association
and the delivery of care and support during the year.

We would like to recognise Vitality Brands Worldwide, who fund the “Take a Break from MND” Project in Victoria, Tasmania and South Australia – this is a wonderful initiative that gives people with MND a “break” from the impact of their disease. They also support our “Walk to D’feet MND” events, and attend the “Superball” series. We would also like to recognise Edgewise Insurance Brokers for their ongoing support and donation of a portion of their “on-line” insurance income during the year.

A full list of our corporate supporters is at the end of this report.

Innovation, creativity and success in all of our productions are guided by Georgie Hollins, of GH2 Design, through the translation of our ideas, and hers, into vibrant and effective presentations.

We would also like to thank all employers who made donations in recognition of deaths of their employees from MND.


The Association could not initiate new and exciting projects or maintain its equipment and other services without the support of philanthropic Trusts and Foundations.

The Association has been fortunate in the 2016/17 financial year to be able to present for consideration by Trusts a number of projects to benefit people living with MND. These projects have covered a broad range of activities, including purchasing new equipment to expand the Equipment Service, and Information Nights, Living Well presentations, and MND Advisor services.

Our thanks are extended to the following philanthropic Trusts and Foundations:

  • Australian Philanthropic Services
  • Collier Charitable Fund
  • Dimmick Charitable Trust
  • Joe White Bequest
  • Naphtali Family Foundation
  • RACV Community Foundation
  • The Dawn Wade Foundation
  • The Douglas Scott Foundation
  • The GW Vowell Foundation Ltd
  • The M Georgina Harris Perpetual
  • The William Angliss Charity

One hundred Clubs, Service Clubs and schools throughout Victoria continued to assist us to deliver quality services. Club members undertake a range of contributory services to support the Association, its events and members. The Association would like to thank the Clubs of Lions, Lionesses, Inner Wheel and Rotary for their support and assistance, and their public demonstration
of commitment to people living with MND. We would also like to recognise some other clubs, associations and schools that have supported MND – a full list is at the end of this Report.


The Association has operated in partnership with a broad range of organisations to improve services for people living with MND. Many of these partnerships, such as those with the Department of Health and Human Services (Vic), Department of Health (Commonwealth), Calvary Health Care Bethlehem, Austin Hospital and all palliative care providers, are of very long standing.

Our newest partner is the NDIA, responsible for delivering the NDIS and now rolling out across Victoria. We have worked constructively with NDIA to achieve common understanding of the needs of people with MND and the capabilities of the NDIA to address those needs through identified services and support. By working in close cooperation with MND Australia and MND NSW, we have been able to present consistent and effective recommendations, supported by evidence, to NDIA for change and improvement of their processes, and improve the experience of people with MND interacting with the NDIA. We look forward to this partnership growing to ensure that all people with MND eligible to be NDIS participants are able to access the services that they need and want.

Our work with MND NSW and MND Australia at the national level has helped influence the NDIS to ensure that people living with MND have their needs addressed in their ever changing environment
and circumstances.

MND Victoria has focussed on partnership as the best way to ensure that people living with MND are able to access quality services where and when they need them. We have spent the last 36
years developing relationships that are supportive and cooperative to ensure that we and other service providers can deliver the best possible support for people with MND. The Association would like to recognise the many agencies, services and service providers that play their role and they include:

  • Community agencies delivering services under a variety of banners, including Home and Community Care services, Linkages providers, aged care accommodation, respite, local government throughout Victoria, disability, health care, transport, day programs, palliative care, volunteers – there are over six hundred (600) relationships with agencies;
  • Related neurological agencies, such as MS Society, Huntington’s Disease Association, MDA, BrainLink, Epilepsy Foundation and Parkinson’s Victoria;
  • Disability agencies and NDS (National Disability Services), the peak disability body;
  • Palliative care service providers, palliative care consortia and Palliative Care Victoria;
  • Universities, including La Trobe, Melbourne, Monash and Deakin and their associated researchers
  • Howard Florey Institute and Neuroscience Victoria
  • Health care professionals, community workers, families, friends and workmates;
  • Calvary Health Care Bethlehem, Victorian Respiratory Support Service (Bowen Centre, ARC), Monash Medical Centre, St Vincent’s Hospital and Geelong Hospital;
  • Department of Health and Human Services, DHHS Southern Region, and all regional offices;
  • Motor Neurone Disease Australia, its members, and the International Alliance of ALS/MND Associations; and many others.

We would also like to recognise and emphasise the partnership that the Association has with its donors and members. MND Victoria is only able to deliver its services for people living with MND
because of our donors, supporters and members. They contribute a significant percentage of the Association’s total budget. They respect, value and support the needs of people living with MND,
the work we undertake to address and respond to those needs, and want to be financial contributors to that work. Without them, the Association would not be able to do what it does, and achieve what it is able to achieve, for people living with MND.


The Association wishes to recognise and thank those people who have remembered MND and the Association in their wills. In particular, the Association acknowledges the following Estates:

  • Estate of Margaret Nicholls
  • Estate of Joan P Francis
  • Estate of Kevin Cunningham
  • Estate of Dudley Barton Adams
  • Estate of James Holt
  • Estate of Kerry Ann Coombs
  • Estate of Leo Tyrell
  • Estate of Joan Hutcheson
  • Estate of Leo Desmond O'Brien

We wish to recognise their generosity, foresight and commitment to the fight against MND.

All bequests received by the Association, unless otherwise specified, are lodged with the MND Care Foundation, an investment controlled by the MND Association of Victoria. Funds are invested in accordance with the investment strategy determined by State Council from time to time.Earnings of the Care Foundation are applied to the general work of the Association or to specific purposes relating to MND as specified in the relevant bequest.

The purpose of the fund is to ensure that the Association can maintain its independence from Government funding and invest in services to assist people living with MND retain their independence and life within the community. The Care Foundation allocates up to 80% of its earnings to services or specific purposes, and reinvests the balance. This process ensures that valuable gifts to the Association live on, and continue to provide benefit to people living with MND in the future.

As at 30 June 2017, the MND Care Foundation has over $6.3 million invested generating income and delivering services for people living with MND. Please contact the Association if you would like information on how you can help by making a bequest, or by regular giving through Centaurea.

Your gift will fight MND into the future.


Funding and Finance

Our goal in the financial activities of the Association is to deliver what is needed; to fund what is provided, and to invest in care, research and sustainability. In a tight year for funding, with pressure from other organisations and changes in the level of Government support, NDIS and Aged Care, the Association has had a good trading outcome and an audited financial loss after transfers to the MND Care Foundation.

The 2016/17 year resulted in a trading surplus of over $330,900, thanks to significant income from bequests of over $855,000. After transfers to the MND Care Foundation of $1,235,322, we have
recorded a loss of $706,019. Funds transferred to the Care Foundation include receipts from bequests and the increases or decreases in the capital value of the Foundation’s investments.

Growth in income from the NDIS continues as more people become participants, offset by transfers of former DHHS income to the NDIA. Income received exceeded $170,000 ($116,700 in 2015/16) and is planned to grow in the coming year. We continue our promotion of the services we provide, and hope that they purchase from our team, who are well experienced in MND and proven providers.

Fundraising strategies continue to be the strength of the Associations finances, although we raised over $400,000 less than last year. Self-reliance through fundraising, paid services and investment
contributed 72% of total income. Our history of having much of our income being dependent on year to year activities continues, with strong reliance on the myriad of fundraising events, small and
large, to continue our funding for care and support for people living with MND, and for research.

Our ongoing encouragement of people to make bequests in favour of the Association continues to be effective, and the Care Foundation continues to provide a strong income stream for the Association. Bequests contributed $855,248, the Care Foundation has grown to $6.33M, and we continue our strategy of investing these funds to deliver income for service delivery. We ask that you consider leaving a bequest to the Association that will fund the fight against MND in the future.

Income 2016/17

Recurrent Government 20%, Government Payments 6%, NDIS 4%, Donations 9%, Bequests 19%, Trusts 3%, Fundraising 37%, Other 2%

We continue to support events that raise funds for research, and have contributed over $460,000 to MND Australia for research projects and for our own Nina Buscombe Awards for travel and conference attendance. Research funding accounted for 11% of expenditure.

Our focus remains on delivery of services with 83% of all expenditure being applied to services to support people living with MND and to research. All funds donated for research, or raised in research focussed events, are applied to research, either through MND Australia and the Motor Neurone Disease Research Institute of Australia (MNDRIA), the provision of Nina Buscombe Awards to support travel by scientists, and health care professionals, or through local research projects.

Income remains dependent on year to year activities, with strong reliance on the myriad of fundraising events both small and large, to continue funding care, support and research. We closely monitor expenditure, maintaining our focus on effective and efficient operations. There is a fine balance to ensure we have appropriate levels of funds available for services.

Expenditure 2016/17

Services, 49% Assistive Technology (inc capital) 23%, Fundraising 11%, Research 11%, Administration 6%

Administration costs remain low at 6%, but have and will increase in dollar terms due to higher monitoring and acquittal processes. We expect that our investment in a new Client Management System will offset some of these increases. Similarly, increased fundraising costs can be expected for the Association to remain an effective competitor in the highly competitive fundraising environment.

Audited accounts will be available from the Association’s office and website after they are presented at the Annual General Meeting. The Association remains in a strong financial position, with  adequate reserves to meet the challenges of the NDIS and Aged Care reforms. Our mission continues to provide and promote the best possible care and support for people living with MND, delivered through service delivery, advocacy and research.

Until there is a cure …. there is care!

Jeremy Urbach

Supporting Companies

Alf Arnold Pharmacy
Associated Concepts Pty Ltd
Balance Group Pty Ltd
Big 4 Hopkins River Holiday
Bond Security Group
Bright's Old Fashioned Lolly Shop
Bunzl Outsourcing
CAS Terras Inc
Central Motor Auctions
Cole Supermarket
Coppard Law Pty Ltd
Darryl Wilson & Associates
Davis and Marks Lawyers
Deakin Rovers
Dromana Dental Clinic Pty Ltd
Eales & Mackenzie
EBOS Group
Edgewise Insurance Brokers Pty Ltd
Environmental Health Service
Eyecare Plus
Flexitray Australia Pty Ltd
Gippsland Jersey
Glenister Steinfort & Co
Herbaceous Flowers
Integritas Finance Solution
JM Hiscock & Sons Pty Ltd
Joe Perri & Associates
Latrobe Valley Magistrates
Laurelle Essendon Gardiner
Lifespan Financial Planning
Lorraine Lea Linen
Magistrates' Court Geelong
Magistrates' Court of Victoria
McCarthy Partners
ME Bank
Medico Legal Communitions
Norton Rose Fulbright Aust
Perett Simpson Pty Ltd
Pet Stays
Postie Fashions Pty Ltd
Prospect Accounts
Reece Australia Limited
Robertson Wouters Accountants
Rosey Jones Coffee Shop
Schneider Electric
Silver Top Taxi Service Ltd
Snappy Pics
St Barbara Limited
State Revenue Office
Stectrum Industry
Sweet Classic Cruisers Car
Tailored Car Accessories
Tarsha Nominees
Tatura Newsagency
Taxtalk Pty Ltd
The Bing Boys
The Catenic
Thyra Country Cafe
Tisher Liner FC Law Pty Ltd
Torquay Pharmacy
Trevor P Weichmann & Assoc
UFS Dispensaries Pty Ltd
Valley Road Nursery Pty Ltd
Schools, Clubs and Service Clubs
Adelphian Craft & Hobby Shop
All Saints Parish School
All Souls Opportunity Shop
Altona Bowling Club Inc
Ararat West Uniting Church
Australian Council of Trade
Barwon Region Support Group
Blue Hills Residences
Brighton Senior Citizens
Christian Brothers St Kilda
City of Berwick Netball Association
Clifton Springs Golf Club
Clyde Tennis Club Inc
Corangamite Bowls Division
Country Women's Association
Country Women's Association
CWA of Victoria ‐ Caniambo
Dandenong South Primary School
Deakin University
Diversitat Youth
Doveton YCW Netball Youth Club
Drouin Country Women's Association
Drysdale Town Club Inc
Education Public Schools
Eley Park Tennis Club Inc
Eltham Weight Loss Club
Firbank Grammar School
Fyan Primary School
Gisborne Secondary College
Happy Wanderers
Heathcote Bowl
Highvale Retirement Village
Inner Wheel Club of Warragul
Inner Wheel District A62
Ishinryu Karate Australia
Ivanhoe Bowling Club
Keilor Downs College
Kingscott Conclave
Knox Bridge Club Inc
Knoxfield Cricket Sporting
KX Pilates
Lalor and Thomastown Comb Pensioners Assoc
Lavington East Primary School
Lion Club of Numurkah
Lions Club of Blackburn North
Lions Club of Boroondara
Lions Club of Broadford Inc
Lions Club of Geelong Inc
Lions Club of Northcote
Lions Club of Reserve
Loch Sport Business & Tourism
Lowana Hills Country Women's Association
Malvern District Auskick
Maroondah City Council
Melbourne Doll Show
Methodist Ladies College
Midlands Golf Bowls Club Inc
Mitcham Scottish Society Inc
Mt Evelyn Primary School
Nepean Women's Golf Club
Nhill Lions Club
Parade College
Pascoe Vale RSL
Point Cook Village
Portarlington Senior Citizens
Probus Club of Warragul Inc
Quota Int. of Goulburn Inc
Rochester Golf Club Inc
Rotary Club of Belgrave
Rotary Club of Corryong
Rotary Club of Mont Albert
Royal South Yarra Lawn Team
Sale Bridge Club
Sportmen’s Association of Australia
St Mary's School
Student Youth Network Inc
Sunbury Bowling Club Inc
Swan Hill Chapter 20
Swan Hill Parish Centre
T.O.W.N Club of Victoria
Tallygaroopna & District Lions Club
The CWA of Vic Inc
The Hub, Glen Waverly Unit
The Lilydale Lodge 18
The Lioness Club of Berwick
The Village Glen
Tintern Grammar School
Trinity Grammar School
Tocumwal Golf & Bowls Club
Tooronga Village Community
Torquay Laurel Group
Vermont Lions Club
Victorian Rover Scout and Mudbash Committee
Walwa Primary School
Wandin Park Association Inc
Wesley College Melbourne Campus
Wesley College Music Department, Elsternwick Campus
Western District Regional Support Group
Wheels for MND
Willaura Uniting Church Fellowship
Yarra Valley Grammar
Yarrawonga & Mulwala Probus