Highlights over 2010 - 2011

1. Introduction

MS Research Australia (MSRA), the research arm of MS Australia (MSA), has had another year of good development with substantial growth in research expenditure while maintaining its fundraising levels.

Kiss Goodbye to MS Campaign

The MSRA research portfolio has been enhanced with the development of the Australia/New Zealand MS Prevention Trial (PrevANZ), a new Register for Stem Cell Treatment in Australia and an update on the Economic Impact of MS in Australia.

In building MSRA’s brand and profile, the new MSRA website has helped significantly with a 50% increase in monthly ‘hits’, reflecting a continuing increase in the use of our website for trusted information. MSRA also undertook the Kiss Goodbye to MS Awareness campaign in May 2011, with a very limited budget, and achieved a new level of awareness using the leverage of much available goodwill.

During the year:

• Our expenditure on research reached $2.9mill, a 25% increase over 2010,
• Additional forward research agreements were made totaling $3.22mill over the next three years.

Meanwhile, MSRA’s financial performance builds on previous years:

• In fundraising a final result of $4.16mill reflected a small increase over 2010
• After research expenditure and overheads, a surplus of $58,000 was achieved, and
• Our balance sheet remains strong with net assets of $3.938mill at June 30th.

2. Developments and Results

Aim: to continually accelerate research in the areas of a) Prevention, b) better Treatments and c) a potential Cure for MS:

A feature of the year involved a record year of actual research funding with $2.9mill allocated, reflecting a 25% increase in research funding over 2010

Specific research highlights included:

• Nineteen (19) newly-funded Investigator-driven projects to start in 2011, taking MS research projects nationally being funded by MSRA to forty-two (42),
• The development of a four-year Australian MS Prevention Trial (PrevANZ), with significant new funding from the MS WA ($400,000) and the Trish MS Research Foundation ($200,000),
• 

  Economic Impact of MS Report

  The Economic Impact of MS update progressed, with early data confirming the prevalence of MS in Australia at 21,200 and (new) direct costs to the country of $1.038 billion p.a. in 2011. The wide release of this data is being planned in conjunction with various Advocacy agendas,
• A new national Hematopoietic Stem Cell Treatment (HSCT) Register (with $100,000 funding extra from the MS Society of WA), recording the pilot MS stem cell procedures in Australia, comparable with similar procedures happening around the world. It will be centred at the Sir Charles Gardiner Hospital in Perth and lead to protocols for clinicians nationally,
• Participation of the ANZgene (Australia/New Zealand) MS genetic research consortium in an international (IMSGC) Genetic Study - that has since published the discovery of 57 MS genetic variations, possibly the major MS research announcement for 2011,
• The MSRA Life Study continued to provide and publish significant data regarding the Employment levels of PwMS in Australia and the take-up of new treatments. It also provided source material for the Economic Impact of MS study in Australia,
• The MSRA Brain Bank (MSRABB) was overhauled, with a new structure and assistance from the Brain and Mind Research Institute at the University of Sydney. Donated brains amount to 22, with pledges increasing to over 1400 and research requests for human tissue increasing. The next task is the thorough classification of available tissue. Brain Bank Director, Prof Simon Hawke, and the Project Manager, (the late) Dr Teresa Wong, completed their valuable contribution to the MSRABB and Dr Michael Barnett will take over in late 2011,
• The CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) debate continued with stories of successful CCSVI treatments contrasting with studies and publications that so far reflect ambiguous links to MS. MSRA has funded one such study of Clinically Isolated Syndrome (CIS) patients, looking for differences between these cases of newly-diagnosed MS and controls, at the Austin Hospital in Melbourne. Results will be available early in 2012.

While Australian CCSVI groups are actively advocating CCSVI Treatment Trials, MSRA continues to monitor developments in this area including recently announced Canadian Trials.

Together, these new projects, research activities and developments reflected a very active year in 2010-11 for MS research in Australia.

Forward Research Funding:
There are a number of forward agreements in MSRA’s Research Grants, now totalling $4.99 mill for the financial years to June 2014. Notionally, this amount is 79% covered by current assets of $3.98mill at 30th June 2011. However, these agreements will be funded partly from our existing non-specific surplus and from future MS Society grants and third party donations as part of our normal fundraising.

Funding Multiplier
From an internal study of 23 MSRA projects and 6 MSRA platforms undertaken from 2005 to 2010 (amounting to $11.4mill of research funding), a multiplier of 3.23 in terms of extra funds attracted, has been achieved from MSRA’s initial funding.

In 2011 we have increased this to nearly 5 times, from new ($3.2mill) National Health & Medical Research Council and the US National MS Society (NHMRC & NMSS) grants announced during the last 12 months.

3. Fundraising

Aim: to meet or exceed budget

MSRA achieved a gross Income over $4mill for the second successive year – the $4.16mill result for 2010/2011 is a 1.5% increase (slowing from the14.8% increase in 2010) but well ahead of the year’s budget of $3.88mill.

F5m Celebration Dinner

Features of the year’s fundraising include:

• Foundation 5 Million (F5m) volunteers reaching $5million in May 2011, after another superb year ($1.02m). At a big Celebration Dinner in April the ‘brand’ was changed to F5m+ and its commitment to fund MS research renewed.
• New extra MS Society support, especially from the MS Society of WA of $500,000, and from MS Qld with $130,000.
• Continued growth of our Research Partner program (with presentations in Brisbane & Sydney in October 2010, and Canberra & Melbourne in May 2011) and the MS Angels program’s expansion beyond Sydney and Canberra to include Brisbane & Melbourne.

4. Public Relations and Communications

Aim: to build a tier-1 Charity profile

New Researcher videos

It has been a very good year for ongoing publicity with several successful PR campaigns and events, including:

• The 2011 Kiss Goodbye to MS campaign for MSA was managed by MSRA, along with state-based events administered locally. The campaign went well, measured against community impact and awareness. It established a template with the aim to now launch a truly National Campaign in 2012,
• A new set of Research Presentation videos, from Research Partner presentations in October 2010 (in Brisbane, Sydney & Melbourne), now available on the MSRA website. These provide a valuable cross-section of the range of research underway in Australia 
• A new MSRA Website, that has inspired continuing substantial (50%) increases in Website hits, up to 6,000 per month, with 28 consecutive months of increases over the previous year:

5. Working with the MS Societies and MS Australia

Aim: to act as the ‘research arm’ of MSA while partnering with the MS Societies in fundraising:

There have been significant MSRA developments with MSA and the MS Societies this last year including:

• A revised Strategic Plan, prepared with help from MSA and MS Society representatives (see Section 7 below).
• A coordinated Marketing & Fundraising plan is being developed to address the opportunity in a new MSL/MSRA partnership
• Focussing National Advocacy & Communications by MSRA on two issues:
  • Encouragement for PBAC approval of the new oral MS treatments, which was successful, and
  • Lobbying the Federal Government to reconsider a discretionary grant for our MS Prevention Trial which has so far been rejected.
    On both these issues, we worked with the support of the National Advocacy Group which met in Canberra on 21st-22nd June.
• Discussions with MSA to develop a National Advocacy Strategic Plan and a National Communications Plan as part of the evolution of MSA as the ‘peak body’ for the Australian MS movement.

6. Management and Governance

AIM: Management of a well functioning operation and coordinated team with high staff loyalty:

Our organisational review during 2010 helped us understand how to better organise our Perth-Chatswood office arrangements.

In 2011, MSRA continued to expand its staff with two key scientific staff appointments - a new Research Development Manager (Dr Lisa Melton, replacing Christine Remediakis) and a new Research (Network) Facilitator, Dr Ruth Hadfield. Both have increased the level of expertise in our research relationships and communications.

Two voluntary members of F5M+ have accepted the positions of Co-Chairs of its ‘Funds Allocation Committee’. Sarah Ross-Smith and Mike Hemmingway will lead the F5m+ group’s allocation of funds for specific research projects and importantly ‘ownership’ of these projects.

The achievements in 2010-11 have all come from the full team at MSRA and they deserve acknowledgement for their commitment and passion to accelerate MS research in Australia. The team members include:

• Petricia Augustus – Administration and Communications Manager
• Heather Cato – Research Coordinator, Perth Office
• Mandy Lee – Events and Relationships Manager
• Neil Robertson – F5m+ Campaign Manager

And we continue to receive considerable assistance from:

• Andrew Long – MSRA’s Company Secretary
• Richard Trimble – Finance Manager, MSA
• Amy Lin – Assistant Accountant, MSA.

MSRA Board matters
There were no changes in the Board membership through the year. Meanwhile, a significant Board Review was undertaken by Cameron Ralph (Board and Governance consultants) to assist in Board governance and succession planning.

7. Looking Towards 2016

Aim: Establish a sustainable future for MS research in Australia

During the year, a draft MSRA Business Plan for 2011-2016 was completed. It provided the framework for a fully revised Strategic Plan to be established. 

This Strategic Plan has an assumption at its core – that MSRA, as the research arm of MSA, needs the support of MSA as a peak body. The difficulties of running an independent national research activity in parallel with largely independent MS Societies constrain MSRA’s fundraising and advocacy.

MS research can only advance another step forward (to a targeted level of $5mill funding p.a.) with the full support of MSA operating as the peak body – and truly coordinating national advocacy and communications.

The Strategic Plan includes a renewed Research Strategy, based on the Australian MS Research Platform, and is strongly influenced by recent discoveries and the convergence of research programs into the basic questions about:

• Preventing MS
• New Targeted Therapies, and
• Regenerative Medicine for MS.

This plan will continue to focus on the strengths in Australia’s MS research community and on increasing our MS research expenditure by another 25% to $3.6mill pa in the next two years.

8. Ongoing support and contributions

Finally, MSRA appreciates the terrific ongoing support received from many sources including:

• The MS Societies and especially the increased support from the MS Society of WA and fundraising cooperation with MS Qld
• Individual donors including Life Governors, Research Partners and MS Angels
• Philanthropic trusts, foundations and MSRA ‘affiliated’ groups such as the Trish MS Research Foundation and Charity Works for MS
• Pharmaceutical companies who are part of MSRA’s Industry Round Table including Bayer Health, Biogen Idec, Merck Serono, Novartis and Sanofi Aventis
• Corporate support continuing from the Macquarie Group Foundation, Blake Dawson, ISPT, Clayton Utz and the Penn Foundation
• Government support from both the Commonwealth Department of Health and Ageing and the NSW Government, via the NSW Office of Science and Medical Research.