MND Australia Research Strategy 2015 – 2018

Executive Summary: Our overarching 2015 – 2018 strategic objective related to research is to: Promote, support and fund the best MND research that has the greatest chance of providing benefit for people living with motor neurone disease. MND Australia acknowledges the urgent need to advance research to better understand MND and to find treatments for this devastating disease. In order to progress MND research MND Australia will double research spend through our research arm, the MND Research Institute of Australia (MNDRIA), from the present $2 million per annum to $4 million per annum by 2018. In just over a decade MNDRIA has grown from a small organisation to the largest national not-for-profit funder of MND research in Australia. Since 2005 we have invested $12.6 million into Australian MND research endeavours which are making a significant contribution in the worldwide effort to solve and stop ALS/MND. Research funds allocated each year have grown considerably over the last five years from $645,014 allocated for grants commencing in 2010 to $2.57 million for grants commencing in 2015. An additional $1.05 million has been awarded for the MND Australia Ice Bucket Challenge Grant which will commence in September 2015. MNDRIA has become the most reliable and trusted source of funding for MND research in Australia.

MNDRIA funds awarded for 2006-2015 and projected 2016-2018 $5,523,826

2018 $4,282,035

2017 $3,319,407

2016 $2,573,184

2015

$2,174,323

2014

$2,014,000

2013 $1,356,921

2012

$1,401,083

2011 2010 2009

$645,014 $554,274 $735,000

2008 2007 2006

$334,023 $185,000

MNDRIA has played a key role in developing the MND research workforce in Australia over the last decade. In 2014 93 researchers applied for a grant and 25 were funded for research projects commencing in 2015 compared to 16 who applied in 2005 and 4 funded for projects commencing in 2006. MNDRIA funds researchers at each stage of their career from PhD Scholarships through to established researchers and their teams. Our members, the State MND Associations, direct funds they receive and raise for research to MNDRIA thus ensuring that their research dollars are allocated to only the best research. Their support and the financial support received from individuals and corporate organisations are absolutely vital in funding our research grants, and over the past decade MNDRIA has received contributions from many generous donors. The chart (below) shows all income sources over the last decade, with member associations contributing 18% MND Australia Research Strategy 2015-2018

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and donations contributing 54 % of total funds received. The donations category includes funds received from individuals, corporate organisations, trusts and foundations. MNDRIA does not actively carry out fundraising events but instead works closely with supporters to encourage, thank and provide feedback for those who do.

MNDRIA sources of income 2005-2014 Associations 18%

Bequests 28%

Donations 54%

MND Australia’s vision is a World without MND and we intend to be part of the history of stopping the disease. Until then, we will strive to ensure that everyone with MND receives the best care, achieves the highest quality of life possible and dies with dignity. Realising this vision means investing more funds in research, developing strategic partnerships with the research community and research funding bodies and ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. The 2015 – 2018 Research Strategy identifies the challenges we face and opportunities we must grasp in pursuit of our mission: to promote, influence and advance MND care and research to improve the

lives of all Australians impacted by motor neurone disease.

This Research Strategy highlights the mechanisms through which we will develop our research funding program over the next four years, to continue to grow MND research in this country and to deliver significant and measurable advances in understanding and treating the disease. We believe that there has never been a better opportunity to translate the significant new knowledge of the disease that has accumulated across the world over the last decade, into potential diagnostics and treatments. During 2015 to 2018 we will develop a program of activity to achieve the following goals: GOAL 1. 2.

grow funds available for research increase opportunities for named grants

3.

develop the research workforce

4.

encourage excellence, partnerships and international collaborations facilitate information flow and reporting to donors strengthen our governance, partnership and influencing activities

5. 6.

MND Australia Research Strategy 2015-2018

PRINCIPLE OUTCOME $4 million available for research allocation in 2018 Fifty percent increase in the number of grants-in-aid awarded and establishment of a major three-year project grant Double the number of high quality researchers receiving grants from MNDRIA MNDRIA funded researchers involved in a range of international collaborations Maintain donations from existing donors and increase number of people making a donation Double the amount of funding available through NHMRC for MND research Page 2

In pursuit of these goals we will seek out and support those who can assist us in their successful delivery. We believe collaboration is absolutely fundamental to success. We all need to work together and have a common goal of ensuring that all the funds available for research go only to the best research that has the greatest chance of making a difference for people with MND. We will therefore continue to maintain rigorous governance and reporting standards in order to ensure that we can continue to support scientific and medical research of the highest quality and relevance to MND. We must remain sufficiently flexible to respond to advances in technology and scientific understanding of neurodegenerative disease.

Achievements 2006 - 2015 • • • • • • •

Many of Australia’s MND researchers are at the forefront of international research. 16 Postdoctoral fellowships have fostered emerging scientists to keep MND as the focus of their research 12 scholarships have encouraged young scientists and research clinicians to the field of MND research. 119 grants-in-aid have supported established researchers as they grow their data to be able to attract major grants from other funding sources such as NHMRC. 1 project grant to acknowledge and support Australia’s leading mid-career MND researcher 1 multicentre project grant that brings together many of Australia’s leading MND clinicians and scientists and links with international collaborators. Many grants include support to travel to the annual International ALS/MND Symposium with resultant networking opportunities leading to an increase in international collaborations.

The Challenge Up to 1,900 people in Australia have MND and approximately 750 die each year, usually within three to five years of symptom onset. Interest in the disease from the academic community has greatly increased in recent years, but is hampered by lack of funds and few pharmaceutical companies are interested in developing a treatment for MND because of the high cost relative to the low return from subsequent sales. As a consequence, a ‘vicious cycle’ is established. The challenge for MND Australia and related organisations is to identify and pursue ways in which this cycle can be broken, either directly through funding research, or indirectly through influencing and campaigning activities. MNDRIA has funded projects in diverse fields of MND research with successful outcomes particularly in genetics, cell biology and discovery of biomarkers. We will continue our role as a supporter of research that is novel, relevant to MND and of the highest scientific merit. Our grants now incorporate additional criteria to promote international collaboration and ensure that basic research studies address the causes of sporadic MND in humans and seek to find effective treatments for the disease. In this way, we will encourage a more multidisciplinary approach to MND research, strengthening the basic-clinical research interface.

MND Australia Research Strategy 2015-2018

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Detailed Strategy Program 1: Grow funds available for research In order to meet our funding commitments, MND Australia relies on a diverse range of financial support, ensuring a reliable and long-term income stream to keep the research momentum going. Every dollar received by MNDRIA is spent directly on research. Funds for research are given through: 1. State MND Associations a. Walks to d’Feet MND and other association events b. Contribution of donations that have been given to the associations for research 2. Loyal donors who have given in the past a. a bi-annual appeal letter is sent to these people together with a newsletter to provide feedback on how their donations have been spent. 3. Foundations and trusts a. trustees who have selected MNDRIA as the most appropriate vehicle for dissemination of funds for MND research b. matched giving eg Macquarie Foundation, BHP, BUPA 4. Corporate donors a. Commonwealth Bank 5. Individuals who a. hold their own fundraising events b. request gifts for research in lieu of a birthday/wedding present etc c. participate in sporting events eg Blackmores Running Festival d. create their own event e.g. Kim Evans’ Devil n Me around Ozee -$75,000 e. contribute unsolicited one-off donations 6. Donations in memoriam 7. Fundraising groups e.g. a. zo-ee ($500,000 over 10 years) – via MND Victoria b. Mick Rodger and Mick Rodger Benalla groups – via MND Victoria c. Watts MND Bike Challenge - $100,000 d. MonSTaR ($88,000 over 3 years) 8. Laugh to Cure MND – the most successful campaign to date - $400,000 in 12 months 9. Bequests

To grow these funding streams and develop new funding opportunities we will: • • • • • • • • •



Initiate and launch a Research focused campaign: o i.e - 4Million4Research / Double the funds/Sideline MND/Put a Price on it for MND Investigate opportunities to engage with and secure the support of high net worth individuals Employ a PT research officer to support the work of the Executive Director Research Review and enhance online giving platforms to increase engagement Meet and engage with Corporate matched giving supporters and donors Attend events to thank supporters and inform them of how their money is being spent Actively contribute to the global Ice Bucket Challenge mark 2 campaign Support and promote major research campaigns through media Meet with state association board and staff annually to report on research outcomes and discuss the value of their research contribution o Members want something in return as do social media friends and followers Develop an ongoing cycle to investigate, promote and develop funding opportunities including corporate sponsorship/support

Principal outcome by 2018:

$4 million available for research allocation in 2018. MND Australia Research Strategy 2015-2018

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Program 2: Increase opportunities for named grants The named grant program provides an opportunity for major donors to sponsor specific grants and this initiative encourages ‘ownership’ and continuity. Donors are encouraged to specify the type of research to be funded e.g understanding the cause, finding an effective treatment, providing better care. O

We understand that donors generally want to contribute to specific projects or activities, rather than the organisation as a whole. The number of named grants awarded has increased from two in 2006 to twenty in 2015. MNDRIA grants specifically funded by individuals, foundations, corporate sponsors and major campaigns: 1. Named grants-in-aid 2. Post-Doctoral Fellowships 3. Travel Grants 4. The MND Australia Leadership Grant 5. The MND Australia Ice Bucket Challenge Grant

To increase opportunities for named grants we will: • • • • • • •

Promote the named grant program through all media Offer naming rights for grant donations of $50,000 or more. MNDRIA will top-up funds needed to support a grant-in- aid that would typically be $100,000 Offer major project grant naming for very large donations and bequests ($750,000 +) Meet with the donors to establish the types of research they would like to fund Invite the sponsors of named grants to the Annual MND Research Meeting Facilitate opportunities for the sponsors to meet the researchers at their labs to showcase the research they are funding Report back to the named grant donors on the progress of the research they are funding.

Principal outcome by 2018: • •

Establishment of a major three-year project grant or MND Research Prize Grant Fifty percent increase in the number of grants-in-aid awarded.

Program 3: Develop the research workforce As funds available for research have grown MNDRIA has not only been able to increase the number of grants but also broaden the types of grants available. This has enabled us to encourage early career researchers into the field and provide opportunity for them to continue their research careers focusing on MND. The range of researcher we fund includes: 1. Early career researchers a. Postgraduate Scholarships co-funded with NHMRC b. PhD scholarship top-up grants c. Postdoctoral fellowships 2. Established researchers a. Grants-in-aid to support novel research that will form the basis for application for project funding from government sources eg NHMRC i. Applications are welcomed from researchers in all fields of MND research (including health care and social research) ii. Proposals must describe how the research can potentially provide benefit for people with MND 3. Leading researchers a. Leadership grant 4. Research teams a. Ice bucket Challenge Grant MND Australia Research Strategy 2015-2018

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To develop the research workforce we will: • • •

Engage with government to influence NHMRC funding to support MND research Increase the number and quality of research grant applications Increase student attendance at the Annual Research Meeting to encourage them to pursue a career in MND research

Principal outcome by 2018:

Double the number of high quality researchers receiving grants from MNDRIA.

Program 4: Encourage excellence and national and international collaborations MNDRIA funds a number of grants that are specifically aimed at encouraging excellence and collaborations nationally and internationally. 1. Leadership Grant rewarding individual excellence 2. Project Grant encouraging multicentre and international collaboration 3. Travel grants a. As part of GIA funding to encourage attendance and participation in the international ALS/MND Symposium b. Specific grants to enable broader experience and encourage international collaboration

To encourage excellence and national and international collaborations we will: • • • •

Continue to fund attendance at the International ALS/MND Conference as part of key grants Promote and support travel grants Promote and support Project MinE Seek opportunities for corporate funding to support an ongoing Leadership Grant

Principal outcome by 2018:

MNDRIA funded researchers involved in a range of international collaborations.

Program 5: Facilitate information flow and reporting to donors The annual MND Australia Research Meeting, primarily intended as an opportunity for researchers to present the outcome of their current MNDRIA funded projects to one another, also provides the opportunity for donors to meet the researchers. The MNDRIA newsletter Advance reports on projects completed in the previous year (June) and new grants awarded for the following year (December). At present 5,000 hardcopies are distributed nationally with the help of state associations who distribute to their members. In addition the newsletter is distributed electronically to subscribers, and internationally via the International Alliance of ALS/MND Associations. 1. MNDRIA grant recipients are required to make every effort to speak at association or fundraising events in their state if requested to attend 2. MND Australia/MNDRIA is represented at significant donor events if possible. 3. Website, social media, international research update,

To facilitate information flow and reporting we will: •

Establish a protocol for communication with donors

Principal outcome by 2018:

Increase in donor engagement. MND Australia Research Strategy 2015-2018

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Program 6: Strengthen our governance, partnership and influencing activities MNDRIA has been listed on the Australian Competitive Grants Registry ACGR since 2011. This adds at least 20% to the value of grants awarded as the Universities receiving grants are able to claim government research block funding to cover overheads and indirect costs of grants awarded by ACGR listed organisations. Applications for grants for the annual funding round are advertised nationally and closing date is the last Friday in August. All applications are reviewed by members of the research committee who consider the track record of the applicant, the significance of the project and the relevance to MND. Scores are averaged before the relative merits of the proposals are considered at the Grants Allocation Meeting. The amount available for distribution at the grants allocation meeting (usually held in October/November) is determined by the Board prior to the meeting. 1. Research committee a. Committee members from most Australia states b. Expertise in all fields of MND research c. New members chosen by current research committee members and endorsed by NHMRC as being suitably qualified to approve allocation of research funds (as required by ATO)

To strengthen our governance, partnership and influencing activities we will: • •

Review current governance structure Engage with government to influence increase in NHMRC funding for MND specific projects

Principal outcome by 2018:

Double the amount of funding available through NHMRC for MND research.

In conclusion The growth of MNDRIA is driven by the strong reputation it has gained through wisely spending every donated dollar on the best research that has the greatest chance of providing benefit for people with MND. The decisions made by the expert research committee members are backed up by a six-monthly reporting requirement to ensure that no additional funds are provided unless satisfactory progress has been made. Encouragement of a collaborative approach, both national and international, will minimise duplication and increase success in research outcomes. Advances in funding MND research will be achieved by nurturing relationships with all funding groups and individual donors and influencing government to provide more research funds for MND which is overlooked because it is considered to be rare.

MND Australia Research Strategy 2015-2018

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