Highlights Over 2008

1. Introduction

MS Research Australia (MSRA), on behalf of the MS Societies around Australia, spent $2.08 million on targeted MS research in 2007-08, a 63% increase on the previous year and over 4 times what was being spent in 2004. We have also established agreements to fund a further $2.215 million in research over the next three years.

These amounts are a record for the MS community’s contribution to research in Australia and reflect the growing commitment that will help solve this terrible disease.

The increased funding also overtakes the amount now being spent by the Commonwealth Government’s annual National Health & Medical Research Council (NHMRC) grants for MS research. So while the MS community is taking a leadership role in funding MS research, the Government is falling behind – a mixed blessing.

2. Research

MSRA has continued to support research where Australia is taking a lead, especially in MS genetic studies, Vitamin D evaluation and in the neuropathology of MS.

Developments on the major projects include:

  • The ANZgene Project: an extension of the national MS Gene Bank Platform initiated in late 2006. It now involves gene mapping of 2,000 DNA samples in Queensland. The results will be validated with an additional 600 samples from Italian collaborators.

Further DNA sample recruitment in New Zealand will see another 1,000 Australian-NZ samples be sent to the UK for inclusion in a 10,000 sample whole-genome study coordinated from Cambridge University (starting in 2009).

Involving the collaboration of 10 institutions, this project will find candidate genes for MS and release results in early 2009. The ultimate goal is to develop diagnostic testing and targeted treatments for MS.

  • The Ausimmune Study, coordinated from the Australian National University, has finished its comprehensive collection of environmental data relating to MS, in Queensland, New South Wales, Victoria and Tasmania, including blood samples indicating the protective influence of Vitamin D.

The analysis will provide exciting options for prevention strategies, with pilot studies already underway. This Study – coordinated by A/Prof Anne-Louise Ponsonby and Dr Robyn Lucas – is aiming to release full results at a World Congress on the Epidemiology of MS in the US in early 2009.

  • A pilot national MSRA Brain Bank facility was established in 2007 and fully launched in February 2008 at Sydney University, with now over 650 pledged MS brains and 15 actual donations so far. This human tissue will be made available to researchers– and reflects the belief that an Australian discovery regarding the early onset of MS may reveal the elusive ‘cause’ and lead to new treatments.

  • An MSRA Clinical Trials Network has developed its operation, from MSRA’s Chatswood office, in an attempt to better coordinate ongoing clinical trials around Australia. With an estimated 12 new MS treatments currently in early to late trial stage, we are keen to help the progress of those that are promising. An executive committee, made up of Australia’s leading neurologists, is assisting MSRA in this coordinating role.
  • Meanwhile the MS Life Study continues, via a longitudinal questionnaire coordinated from Canberra Hospital (led by Dr Rex Simmons) and this year it revealed the benefits of immunotherapy adherence and new information on switching medications. These findings are currently being presented to MS Society clinical staff, prior to publication in late 2008.
  • In new Fellowship offers, MSRA has developed an Australian-UK MS Research Fellowship (from Australia or the UK) for 2009, and a National Institute of Clinical Studies MS Research Fellowship, also for 2009.

MSRA has also funded over 20 other ‘investigator-driven’ projects around Australia including stem-cell research in Sydney and Melbourne, further investigation into the role of glandular fever (Epstein - Barr virus) and MS in Brisbane, an evaluation of self-management stress-relief systems in Perth and the development of proteomics research for MS in Adelaide.

3. Research Conferences & Workshops

A significant ‘Progress in MS Research’ Conference was also held in Melbourne during the year (November 2007) and the papers presented reflected the exciting new level of MS research in Australia.There was a predictable emphasis on research about the early onset of MS – where Australian scientists (Prof John Prineas and Dr Michael Barnett) have been pathfinders. The potential is strong for better understanding of the cause of MS and developing strategies that might slow progress in the disease.

As part of MSRA’s ongoing series of Research Workshops, three events were successfully staged during 2008:

  • An MS Gene Expression Research Workshop – 19th April. Brought together 12 of Australia’s leading MS genetic researchers, under the auspices of ANZgene, MSRA’s major genetic research platform. Further direction for gene expression research was decided.
  • A Psycho-Neuro-Immunology (PNI) in MS workshop over the weekend of 26th /27th June, brought together 20 of Australia’s experts on links between mind and body in MS. The group agreed to undertake a major new clinical trial on aspects of PNI.
  • A NSW MS Research Network of Sydney and Newcastle neurologists and MS researchers met on the 9th August to discuss further close collaboration on projects in NSW – this ‘Network’ (representing further local collaboration) is to be developed further with MSRA’s support.

4. Fundraising & Collaboration with State MS Societies

Total income for the year reached $3.42m – from diverse sources including Foundation 5 Million, the MS Societies, Commonwealth Government, Macquarie Group Foundation and other corporates, the four major Pharmaceutical Companies, Philanthropic Trusts & Foundations including major grants from the John T Reid Charitable Trust and the Trish MS Research Foundation, and from continuing AFA member support.

MSRA continued to work with the State MS Societies:

  • ACT - via specific fundraising events (including one at the Turkish Embassy)
  • NSW/Vic - coordinating approaches to Trusts & Foundations, working jointly on Bequests, coordinating PR activity for MS Awareness Week and assisting with the Mega Swim in NSW
  • Qld - via joint Board Room Lunches, specific approaches to donors, assistance with a major ‘MSquerade Ball’ and PR in Awareness Week
  • SA/NT- in assisting with plans for a Gala Dinner
  • WA - in directing increased research allocations to specific projects

This collaboration has continued into the new financial year, with joint events (including a visit from Betty Cuthbert), plans for a joint fundraising Regatta and a Vic Leadership Fundraising Group being formed.

Fundraising costs for 2007-08 were reduced against the previous year, down by $12,000 to approximately $401,000, with a ‘Total cost of Fund Raising to Gross Fund Raising Income’ ratio lowered to 12%.

 

5. PR & Website

MSRA continued to expand its reach to new audiences, interested in MS research, with several PR initiatives, including:

  • A major launch of the MSRA Brain Bank in February 2008
  • Significant MS research content during MS Awareness Week (in most states)
  • Continuing publication of NEXT, the MSRA newsletter – developing now into an e-news format
  • New website content, that is now developing with the addition of multi-media
  • Development of the MSRA Research Partners concept, to acknowledge generous donors to MS research.

6. Board, Governance & Staffing

The MSRA Board was strengthened with two new Board members, Mr Jim Fox and Ms Susan Nixon, both with considerable business experience and much to offer in support of MSRA fundraising.

A full scale Strategic Review was undertaken from late 2007, with the considerable pro bono help from an external consultant and Director, Gabrielle Dalmau. This culminated in a very complete Strategic Plan being presented to MS Australia in September 2008.

Staffing at MSRA was bolstered by the employment of a Research Development Manager, Christine Remediakis – who now manages both the MSRA Brain Bank and the MS Clinical Trials Network.

7. The Coming Year

In research, we look forward to a year where significant results will be published, from the Ausimmune Study, the ANZgene Genetics Platform, the Epstein - Barr virus research and from the MS Life Study.

It will be another year of research expenditure approaching $2 million, with several excellent new programs including further developments in proteomics in MS, neuropathology and stem cell research.

We will be visited in March 2009 by Dr John Richert, Head of Research for the National MS Society of the USA and we expect to hold another biennial Scientific Research Conference (in Sydney, late 2009).

The next financial year will be challenging for fundraising. However, a number of new initiatives will be launched or further developed, including:

  • The MSRA Research Partners Program (nationally)
  • The Victorian Leadership Fundraising Group
  • The MS Angels concept (in NSW)
  • Another MS Ball in Queensland
  • Sailing Regattas in the Eastern States
  • A major new donor-acquisition program, and
  • Multi-media presence on our website

We will also look to further strengthen our relationship with the MS Societies, and to new alliances with other disease and funding groups, wherever there may be synergies.

While our continuing aim is to accelerate research, we believe we are moving well toward our ultimate goal of Freedom from MS.