Impacts and achievements
MS Research Australia is driven by our mission to find the cause, improve treatments for and ultimately find a cure for MS via the coordination and funding of research. Since our inception in 2004 the organisation has made substantial leaps towards achieving our mission generating valuable impacts and achievements.
For charities, measuring a specific organisations impacts and achievements has always been difficult. This is because there is a lack of standardised measures across the board and therefore no easy way to make comparable comparisons. Here at MS Research Australia, we are dedicated to making a positive impact on the lives of people living with MS, and we are continuously striving to improve our performance, and the only way to ensure this is by having meaningful measures of our success impact.
The method we have chosen to measure our impacts and achievements revolve around four metrics, which have been developed by The Milken Institute in the US and are –
- Accountability (milestones and monitoring, strategy and planning, management, commercialisation, community engagement and financial sustainability)
- Collaboration (knowledge sharing, cooperative research, global research, strategic partnerships)
- Research effectiveness (strategic achievements, portfolio congruence, scientific advancement)
- Resource building (tools and resource development, training and career development)
Furthermore, these can be separated into three sections, big picture impacts, direct impacts and MS Research Australia Awards and Achievements.
MS Research Australia has significantly contributed to big picture impacts in MS by dramatically increasing the funding dedicated to MS research in Australia.
Some of these include:
- Hospitalisations of people with MS in 2011 have declined by 75% compared to hospitalisations in 1984 according to a recent study (Marrie 2014).
- Over the last 15 years, people with MS are being diagnosed ten times earlier (Brownlee et al 2015), and disability milestones are being reached almost 10 years later on average (Kister 2012).
- Long term follow-up of people treated with interferon-beta medications showed mortality (death) due to MS reduced by almost 47% (Goodin 2012).
- In 2006, we only had 2 daily injectable treatments for the most common form of MS. We now have 5 times as many treatments in combinations of injections, tablets or infrequent infusions. Some with the ability to stop MS in its tracks in many people (Broadley 2014, MS Research Australia published report).
- Since 2010 employment rates have improved significantly for people with MS. Additionally, 95% of people with MS received requested changes in their role received them and 82% of people who asked for changes to their environment obtained them. Previous studies have also shown that disclosure of an MS diagnosis helped job retention.
Since being founded in 2004 MS Research Australia has made significant funding available for researchers and has also supported the development of several directed research platforms. This has led to game changing research breakthroughs changing the face of MS clinical practice here in Australia.
Some of the key impacts include:
- Our funded research has produced, 26 new research methods, 7 new clinical blood tests, 2 new clinical assessment tools, 18 grants contributed to biobanks, 5 new mouse models, 5 new biomarkers being developed, 7 grants led to the creation of registries and 5 patents arose from our supported research
- Funding from MS Research Australia supported the discovery of a blood test developed by Macquarie University researchers that can distinguish between relapsing and progressive forms of MS.
- The MS Research Australia Brain Bank received 144 new expressions of interest, and 36 confirmed pledges to donate since July 2015. In total we now have 887 donor pledges from around the country. There were 11 successful MS brain donations since July 2015, bringing the total to 67 MS brains donated for research around Australia.
- Successful completion of an important milestone agreement between MS Research Australia, MS Queensland and QIMR to work collaboratively on a phase 1 clinical trial for the Epstein Barr Virus for a potential new therapy for progressive MS.
- MS Research Australia and Juvenile Diabetes Research Foundation were jointly awarded a grant from the Macquarie Group Foundation for $150,000 to conduct a unique project to explore the shared genetics of MS and type 1 diabetes. This project was the brainchild from the CEOs from both organisations. This brings together leading figures from both sides, including leading immunologist and MS researcher, Professor Graeme Stewart from the Westmead Institute of Medical Research and autoimmune disease and diabetes researcher, Professor Chris Goodnow from the Garvan Research Institute.
- MS Research Australia directly and via the International Progressive MS, advocates strongly for availability of new drugs throughout the world. The exciting new drug ocrelizumab, looks set to be the first therapy registered for people with progressive MS since the disease was discovered. Many tens of thousands people worldwide could potentially benefit initially with hundreds of thousands more in the future.
- MS Research Australia was selected as one of the four high-impact charities to be a recipient of The Sohn Hearts and Minds funding.
- MS Research Australia and the Macquarie Group began working together to facilitate cutting-edge clinical research by funding a Senior Research Fellow and research time for a Practitioner Fellow (SRF/PF) to collaborate on a shared program of research that will accelerate translation of research outcomes into clinical practice. Within the 3-year period of the grant, identify or validate at least one intervention that will significantly improve the lives of people with MS and demonstrate significant progress towards clinical translation and/or implementation of an intervention.
- MS Research Australia funded $4 million to research this financial year, compared to $3.2 million the previous year, increasing funding by 25%. This is the largest contribution to MS research in our history. Over the last couple of years, we have funded more MS research than the federal governments competitive research scheme- the NHMRC.
- Professor David Booth has completed his highly successful five year senior research fellowship. During this time he was a pivotal member of the ANZgene and IMSGC collaborations, published numerous papers and was awarded several NHMRC project grants totalling $2.5 million, including a prestigious 5 year Senior Research Fellowship from the NHMRC.
- The IPMSA awarded 22 research grants to researchers in 9 countries in their first round of ‘challenge award’ funding – Australian researcher Dr Steven Petratos was among the recipients for his work on neuroprotection..
- Game changing MS infusion-treatment, Lemtrada, becomes available for reimbursement in Australia – MS Research Australia and MS Australia have made submissions to the PBAC regarding the availability of this medication, adding to the now considerable armoury available to people with MS and their clinicians.
- The Ausimmune Study published findings describing a latitude gradient in Australia for prevalence of early demyelination. This landmark study provides the foundation for future work into the role of Vitamin D.
- In 2013, the Vitamin D prevention trial starts recruiting across Australia and NZ. Over 100 patients have been recruited over 21 trail sites. The trial is the largest of its kind globally.
- We produced the 2011 Economic Impact of MS in the Australia report, with thanks to funders, such as the Macquarie Group Foundation. This report has underpinned the vast majority of our combined advocacy activities. It has also been absolutely critical in every submission and application that we have made to State and Federal Governments over the last few years. It has been widely used by MS researchers around Australia, who have used the data to support funding applications to the NHMRC and other funding bodies – effectively leveraging further targeted funds for MS research.
- MS Research Australia plays an important funding role in the International MS Genetics Consortium (IMSGC) discovery, which was published in the prestigious journal “Nature Genetics”. This publication represented another giant step forward in understanding the genetic contribution to the cause of MS, a step of equal size to that published in “Nature” in 2011. It shows again the power of global collaboration in pursuit of the cause and cure of MS. The ensuing PR and media initiative, led by Westmead Millennium Institute and MS Research Australia reached a total global audience of over 62 million people.
- Winner – The Australian Charity Awards, 2018 Outstanding Achievement
- Winner – Telstra Business Awards, 2017 Telstra Australian Charity Award
- Finalist – Telstra Business Awards, 2017 Telstra Australian Business of the Year
- Winner – Telstra Business Awards, 2017 NSW Business of the Year
- Winner – Telstra Business Awards, 2017 NSW Charity of the Year
- Winner – The Australian Charity Awards, 2017 Outstanding Achievement
- Winner – Fundraising Institute of Australia Awards, 2016 Most Effective Creative Campaign
- Winner – Fundraising Institute of Australia Awards, 2016 Special Event Award
- Winner – The Australian Charity Awards, 2016 Outstanding Achievement
- Winner – The Australian Charity Awards, 2015 Charity of the Year
- Winner – The Australian Charity Awards, 2015 Outstanding Achievement
- Highly Commended – Fundraising Institute of Australia Awards, 2015 Special Event Award
- Highly Commended – Golden Target Awards, 2015 Small budget / Pro bono