MS Australia

MS Australia, commonly known as Multiple Sclerosis Australia, is a national Australian not-for-profit organisation focused on improving the lives of people affected by multiple sclerosis (MS). Its work combines research funding, policy advocacy, community representation and collaboration with state-based MS organisations. The organisation supports Australians living with MS as well as their families, carers and broader support networks. The organisation's roots extend to the Australian MS Society, established in 1956, with its first general meeting held in February 1957. It was among the earliest national MS societies established internationally, following the creation of MS organisations in the United States, Canada and the United Kingdom. MS Australia was registered as an Australian charitable entity in 1975. Its national role developed around coordinating research and advocacy while working alongside state and territory organisations that provide more direct services to people with MS. Research is central to MS Australia's identity. In 2004, it established MS Research Australia as a subsidiary research branch. In June 2020, MS Research Australia was integrated into MS Australia as a fully integrated organisation operating under one chief executive and board. The organisation describes its research agenda as addressing the biological basis of MS, improving diagnosis and treatment, predicting or preventing disease onset, repairing damaged cells and neural tissue, and developing better approaches to symptom management and rehabilitation. MS Australia funds individual researchers and collaborative projects, including national research infrastructure and clinical networks. Activities associated with its research program include the MS Australia Gene Bank and ANZgene Consortium, the MS Research Australia Brain Bank, the MS Research Australia Clinical Trials Network, the Australian MS Longitudinal Study, proteomics collaborations and PrevANZ, a vitamin D and MS prevention trial. The organisation has also supported biobanks, registries, mouse models, biomarker development, clinical assessment tools and research connected with potential therapies for progressive MS. Its advocacy work operates at individual, systemic and collaborative levels. At the individual level, it supports access to information and assistance for people affected by MS. At the systemic level, it engages with governments, legislators, service providers and public institutions on disability policy, employment, healthcare access, medicines and community attitudes. At the collaborative level, it works with disability, chronic illness, rare disease, neurological and assistive-technology organisations. Its submissions have included policy positions on the regulation and accessibility of cannabinoids for people with MS and contributions to development of Australia's National Disability Employment Strategy. MS Australia works with four principal state-based MS bodies: MS Limited, serving the Australian Capital Territory, New South Wales, Victoria and Tasmania; MS Queensland; MS Society SA/NT; and MSWA in Western Australia. It also collaborates with groups such as Rare Voices Australia and participates in alliances addressing neurological disease, patient advocacy, accessible product design, assistive technology, chronic illness and loneliness. Internationally, MS Australia is involved with the Multiple Sclerosis International Federation, the International Progressive MS Alliance, the International MS Genetics Consortium and MS Brain Health. It participates in World MS Day, an international awareness and advocacy initiative led by the Multiple Sclerosis International Federation. Through these relationships, the organisation connects Australian research and policy work with global efforts to improve diagnosis, treatment, prevention and quality of life for people living with MS. As of July 2021, the organisation cited more than 25,000 people living with MS in Australia, although prevalence estimates and organisational programs may change over time.

MS Australia's institutional history began with the formation of the Australian MS Society in 1956. Its first general meeting took place in February 1957, placing the Australian organisation among the earliest dedicated multiple sclerosis societies in the world. Its emergence followed the creation of the National Multiple Sclerosis Society in the United States, the Multiple Sclerosis Society of Canada and the Multiple Sclerosis Society of Great Britain. The Australian movement developed to address the information, support, advocacy and research needs of people living with a disease that was still poorly understood and for which treatment options were limited. The organisation was registered as a charitable entity in Australia in 1975. Over time, Australia's MS sector developed a federated structure in which state-based bodies provide much of the direct support and service delivery, while the national organisation concentrates on coordination, research, national advocacy and representation. MS Australia works with MS Limited, MS Queensland, MS Society SA/NT and MSWA, connecting national policy and research priorities with the experience of people affected by MS in different parts of the country. Research became increasingly important to the organisation's long-term strategy. In 2004, MS Australia created MS Research Australia as a subsidiary branch dedicated to research development and funding. The research program expanded beyond isolated grants to include collaborative networks, biological resources, longitudinal studies and clinical research. Its stated objectives include improving diagnosis and treatment, identifying ways to predict or prevent MS, supporting rehabilitation and symptom management, and developing methods to repair or regenerate neural tissue damaged by the disease. The research portfolio has included the MS Australia Gene Bank and ANZgene Consortium, the MS Research Australia Brain Bank, the MS Research Australia Clinical Trials Network, the Australian MS Longitudinal Study, proteomics work and PrevANZ, a vitamin D prevention trial. The organisation has also reported support for new research methods, clinical blood tests, assessment tools, biobanks, mouse models, biomarkers, registries and patents. These outputs reflect the organisation's role as a funder and convener rather than as a manufacturer of medicines or medical devices. In June 2020, MS Research Australia was brought into MS Australia as a fully integrated organisation operating under one chief executive and board. The integration aligned research activity with the wider organisation's advocacy and community mission. MS Australia has described its medium- and long-term research emphasis as understanding the biological mechanisms that trigger MS and cause further damage, while its shorter-term work includes clinical research into alternative ways of managing symptoms and disability. The Australian MS Longitudinal Study provides evidence about the physical, social and economic effects of MS on Australians. Such evidence supports advocacy, service planning and funding cases. The organisation has also supported work including the Ausimmune study, research into blood tests that may distinguish relapsing and progressive forms of MS, and collaborative efforts exploring possible therapies associated with Epstein–Barr virus and progressive MS. Advocacy is another core part of MS Australia's development. Its approach includes assisting individuals, seeking systemic changes to legislation and government or service-provider policy, and cooperating with organisations representing people with disabilities, chronic illness and rare diseases. Policy submissions have addressed issues such as access to medicines, the regulatory treatment of cannabinoids and employment barriers affecting people with MS. The organisation participates in Australian alliances including the Neurological Alliance Australia, Australian Patient Advocacy Alliance, Accessible Product Design Alliance, Assistive Technology for All Alliance, Chronic Illness Alliance, Ending Loneliness Together and Stem Cells Australia. MS Australia also operates within the global MS community. It is connected with the Multiple Sclerosis International Federation and participates in World MS Day. It is a managing member of the International Progressive MS Alliance and has links to the International MS Genetics Consortium and MS Brain Health. These relationships allow Australian researchers, advocates and community representatives to contribute to international priorities, particularly in progressive MS, genetics, clinical standards, treatment access and disease awareness. Today, MS Australia presents itself as a national coordinating, research-funding and advocacy organisation rather than a conventional commercial brand. Its role is to strengthen Australia's MS research ecosystem, represent the interests of people affected by MS and connect communities with state-based support organisations. The organisation's work spans scientific discovery, evidence gathering, policy development, public education and international collaboration.

• 2020

  Research branch integrated into MS Australia

  [1]MS Australiaen.wikipedia.org

  MS Research Australia became a fully integrated part of MS Australia under one chief executive and board.

• 2004

  MS Research Australia established

  [1]MS Australiaen.wikipedia.org

  MS Australia established MS Research Australia as a subsidiary research branch.

• 1975

  Registered as an Australian charity

  [1]MS Australiaen.wikipedia.org

  MS Australia was registered as a charitable entity in Australia.

• 1957

  First general meeting

  [1]MS Australiaen.wikipedia.org

  The Australian MS Society held its first general meeting in February.

• 1956

  Australian MS Society established

  [1]MS Australiaen.wikipedia.org

  The organisation's predecessor, the Australian MS Society, was established as an early national multiple sclerosis society.

A national MS community organisation that combines research investment, public-policy advocacy and coordination across Australia's state-based MS bodies, while linking Australian work to international MS networks.

• Research funding

  Research grants

  MS Australia funds individual researchers, research teams and larger collaborative platforms working across diagnosis, treatment, prevention, symptom management, rehabilitation, repair and regeneration. Its funding model is intended to connect Australian research groups and create capabilities that may be difficult for isolated teams to develop independently.

• Research and data program

  Australian MS Longitudinal Study

  The Australian MS Longitudinal Study examines the physical, social and economic effects of multiple sclerosis on Australians. Its evidence can inform advocacy, service development and policy arguments concerning the needs and costs experienced by people living with MS.

• Research infrastructure

  MS Research Australia Brain Bank

  The MS Research Australia Brain Bank is part of the organisation's research infrastructure and supports studies requiring donated neurological tissue. MS Australia has reported efforts to increase expressions of interest and confirmed donation pledges for this resource.

• Genetics research

  MS Australia Gene Bank and ANZgene Consortium

  These connected research activities support genetic and biological investigation of multiple sclerosis. They form part of MS Australia's broader effort to improve understanding of disease mechanisms and identify factors relevant to prediction, prevention and treatment.

• Clinical research

  MS Research Australia Clinical Trials Network

  The Clinical Trials Network helps connect Australian clinical researchers and supports studies intended to evaluate treatments, symptom-management approaches and other interventions relevant to multiple sclerosis.

• World MS Day

  Australia · International

  MS Australia participates in World MS Day, the international awareness and advocacy initiative led by the Multiple Sclerosis International Federation. Activities take place around 30 May and seek to unite people affected by MS, increase public understanding and promote action on issues facing the MS community.

  Outcome. Ongoing participation in a global MS awareness and advocacy platform.

  Source

• 2020

  Integrate MS Research Australia into MS AustraliaStrategy

  Background

  MS Australia had operated MS Research Australia as a subsidiary research branch since 2004, while research and national advocacy were increasingly interconnected.

  Action taken

  In June 2020, MS Research Australia was integrated into MS Australia as a fully integrated organisation under one chief executive and board.

  Aftermath

  The integration consolidated the organisation's research, advocacy and community mission within a single governance structure.

  Source

• 2020

  MS Research Australia integrated into MS Australia[1]MS Australiaen.wikipedia.org

  Leadership change

  MS Research Australia was incorporated into MS Australia as a fully integrated organisation under a single chief executive and board.

• MS Australia participates in World MS Day[1]MS Australiaen.wikipedia.org

  Campaign

  The organisation takes part in the annual global MS awareness and advocacy program led by the Multiple Sclerosis International Federation, with activities generally centred on 30 May.

• MS Australia supports collaborative research on progressive MS[1]MS Australiaen.wikipedia.org

  Product launch · Other

  The organisation has supported collaboration involving MS Research Australia, MS Queensland and QIMR around a phase-one clinical trial investigating an Epstein–Barr virus-related potential therapy for progressive MS.

1. 1MS Australiaen.wikipedia.org
2. 2MS Australia official websitemsaustralia.org.au