ABOUT NMR
National MSA Research
National MSA Research exists to help create a better future for people affected by Multiple System Atrophy.
We are building an organisation focused on increasing awareness of MSA, strengthening connections across the MSA community and supporting research that may improve understanding, care and future treatment options.
Who we are
National MSA Research is an Australian organisation dedicated to supporting people affected by Multiple System Atrophy and helping strengthen the foundations for future MSA research.
MSA is rare, which means many people have never heard of the condition until it affects someone they know.
We want to help change that.
By raising awareness, providing information, connecting people and developing research relationships, we aim to ensure that MSA receives greater recognition and that people affected by the condition feel better informed and connected
Our Mission
National MSA Research Australia is committed to funding vital research into Multiple System Atrophy (MSA).
We have a two-fold mission: to raise funds for crucial research and increase public awareness of MSA.
National MSA Research is a registered non-profit charity with the Australian Charities and Not-for-profits Commission (ACNC) and holds Deductible Gift Recipient (DGR) status with the Australian Taxation Office (ATO).
“Combatting MSA together, until the world is free of MSA.”
Our purpose
Our purpose is simple:
To help create a better future for people affected by Multiple System Atrophy.
We work toward this by focusing on four key areas:
Awareness
Increasing understanding of MSA within the Australian community and helping more people recognise the impact of this rare neurological condition.
Connection
Helping connect people living with MSA, families, carers, healthcare professionals, researchers and supporters.
Research
Building relationships and creating opportunities that may help strengthen MSA research in Australia and internationally.
Support
Developing practical information, resources, events and community initiatives for people affected by MSA.
Why National MSA Research exists
Rare conditions can face unique challenges.
There may be fewer researchers working in the field, less public awareness, limited access to specialised information and fewer opportunities for people affected by the condition to connect with others who understand their experience.
National MSA Research was established to help address those gaps.
We want to build an organisation that can grow alongside the needs of the MSA community while remaining focused, responsible and transparent about what we can achieve.
What we do
Our work is continuing to grow and may include:
- providing information about Multiple System Atrophy
- developing patient, family and carer resources
- supporting awareness campaigns
- connecting the MSA community
- organising community and fundraising events
- supporting research relationships and collaboration
- sharing research information and opportunities
- engaging with medical and clinical professionals
- developing partnerships with organisations and businesses
- supporting fundraising initiatives
- creating opportunities for volunteers and Ambassadors
- building systems that make our work more accessible and sustainable
As new opportunities develop, we will continue expanding our activities in ways that support our purpose.
Our approach to research
We believe that meaningful research support requires careful planning, collaboration and transparency.
National MSA Research is developing relationships with researchers, clinicians and advisors who can help strengthen our understanding of the MSA research landscape.
As our research program grows, we want our community to be able to clearly understand what we are supporting, why it matters and how funds are being used.
Our people
National MSA Research is supported by people who bring a wide range of experience, knowledge and perspectives to our organisation.
This includes our Board of Directors, Research Advisors, Medical & Clinical Advisors, volunteers, Ambassadors and other supporters.
Together, they help guide our organisation, support our activities and strengthen the work we are building.
Working with the community
We believe people affected by MSA should have opportunities to be informed, connected and involved.
As our community programs grow, we want to create more ways for people living with MSA, families and carers to connect with National MSA Research and with one another.
This includes future development of our Community Hub, events, information sessions, research updates, resources and other opportunities for people to participate.
Our values
Community
People affected by MSA are at the heart of why we exist.
Integrity
We aim to communicate honestly, act responsibly and make decisions that reflect the purpose of our organisation.
Collaboration
Progress is stronger when researchers, clinicians, families, organisations and communities work together.
Transparency
We want our supporters and community to understand what we are doing, how our work is developing and how support is being used.
Hope
While MSA remains a challenging condition, we believe research, awareness, connection and collaboration can help create a better future.
Growing responsibly
National MSA Research is still growing.
We are building the systems, partnerships, resources and programs needed to support our long-term work.
Rather than trying to appear larger than we are, we want to grow responsibly and create strong foundations that will allow us to support the MSA community for many years to come.
As our organisation develops, we will continue sharing updates about our activities, research relationships, events and future initiatives.
Governance and accountability
Good governance is important to National MSA Research.
Our Board of Directors is responsible for the governance and strategic direction of the organisation, supported by appropriate professional and advisory expertise.
We are committed to responsible financial management, appropriate oversight and maintaining accurate records of our activities, fundraising and research support.
As our reporting and governance resources are developed, relevant public information will be made available through our website.
Join us
National MSA Research is being built with the support of people who believe that MSA deserves greater awareness, stronger research and a more connected community.
There are many ways to become involved — as a volunteer, fundraiser, Ambassador, healthcare professional, researcher, partner or supporter.
Contact National MSA Research
If you would like to learn more about our organisation, discuss a partnership or find out how you can become involved, we would be pleased to hear from you.