Menzies Institute for Medical Research

MS Research Flagship
Newsletter

September 2026

RESEARCH SPOTLIGHT

Understanding the NDIS experience for people with MS

For many Australians living with MS, the National Disability Insurance Scheme (NDIS) is absolutely vital – but getting and managing a plan can be complicated. Our team, led by Dr Rebecca Banham and Professor Bruce Taylor, aimed to find out:

• Who is more likely to have an NDIS plan?
• What is it like to apply to the NDIS and manage a plan?

To do this, we gathered over 1,200 surveys through the Australian MS Longitudinal Study. We also conducted 30 interviews with people living with MS, their carers and supporters, and healthcare professionals.

From the surveys, we found that people with higher levels of disability were the most likely to have an NDIS plan. People with progressive onset MS were also more likely to have a plan. Social factors such as age, sex, income or where a person lived had far less impact on whether someone had a plan.

During interviews, people told us about how vital NDIS support can be. However, applying for and managing a plan often involved serious problems and stress. Many people had faced challenges such as poor communication, confusing advice, and feeling like they had to prove they were ‘disabled enough’. Dealing with the NDIS could feel like a ‘double-edged sword’: the funding and support improved quality of life, but the NDIS could also be a source of stress, stigma and anxiety.

By combining survey and interview findings we gained a clearer understanding of people’s experiences accessing and navigating the NDIS. It is encouraging that for Australians living with MS, access to the NDIS is most closely tied to their disability support needs, rather than their background. However, these results are also an important reminder that the impact of the NDIS goes beyond the moment of a plan being approved, and the experience of navigating the system matters too.

NDIS study team members (back row, L-R) Chris Gumley, Professor Bruce Taylor, Dr Rebecca Banham and Meg Denham (centre front) .

This study was funded by MS Australia

What’s the best treatment approach for late-onset MS?

People diagnosed with multiple sclerosis later in life, known as late-onset MS, are often underrepresented in clinical trials. As a result, there is limited evidence to guide treatment decisions for this growing group of people living with MS.

The Flagship’s Dr Yi Chao Foong was first author on a recent study comparing the effectiveness of disease-modifying therapies in people diagnosed with MS later in life. The research drew on data from MSBase, a large international registry that tracks treatment and health outcomes for people living with MS.

They found that moderate- to high-efficacy therapies were associated with a lower risk of relapses than lower-efficacy treatments, with benefits similar to those seen in younger people with MS. These findings provide important evidence to help clinicians and people living with late-onset MS make more informed treatment decisions. They also highlight the importance of ensuring this group is represented in MS research.

→ Read the full paper in the Journal of Neurology, Neurosurgery & Psychiatry

Dr Yi Chao Foong

IN THE COMMUNITY

Taking MS research beyond the lab

In August, Dr Xin Lin brought his work out of the lab and into the hands of prospective students for the biomedicine research showcase, part of University of Tasmania’s open day.

Xin showcased his research on detecting previously invisible immune signals in the blood. His work focuses on tiny protein fragments called immunopeptides, which act like biological ‘ID badges’ and can reveal changes in the immune system at the early stages of the disease. By studying blood samples from people newly diagnosed with MS, Xin aims to uncover signals that could improve understanding of how the disease develops and support more personalised treatment decisions for people living with MS in the future.

The display attracted strong interest from visitors, with many stopping to learn more about MS research and its potential to improve the lives of people living with the disease.

→ Watch Xin explain his research

Dr Xin Lin with an attentive audience at the University of Tasmania open day

This work is supported by funding from MS Australia, the Medical Research Future Fund, and the National Health and Medical Research Council Multiple Sclerosis Centre of Research Excellence.

EVENTS & HIGHLIGHTS

MS Research Flagship students share their work at Health Research Showcase

We were delighted to see two of our MS Centre of Research Excellence PhD students represent the MS Research Flagship at the University of Tasmania Health Research Showcase in June. The showcase brought together researchers, clinicians and students from across the university to share research, build connections and highlight work improving health outcomes in Tasmania and beyond.

Ann Piermatteo presented her research investigating astrocytes, key cells involved in inflammation in MS. Using patient-derived stem cell models, she is exploring how the genetic background of these cells may contribute to disease onset and progression, with the long-term goal of identifying new or repurposed treatments to help slow progression and improve quality of life for people living with MS.

Erin Phillips presented research examining whether intrinsic dysfunction in specialised vascular cells called pericytes may contribute to abnormal blood flow, an early hallmark of progressive-onset MS. Improving our understanding of these changes could help identify new treatment targets for people living with this form of MS, where therapeutic options remain limited.

Celebrating leaders in the MS community

Public nominations are now open for the 2026 MS Australia Awards, which celebrate the remarkable people making a lasting difference across the MS community. To tie in with the opening of nominations, the 2025 Award recipients, including our own Professor Bruce Taylor, recently joined MS Australia’s Raw Nerve podcast to discuss their work and impact across the MS community.

→ Listen to Bruce on Raw Nerve

→ Find out more about the awards and nominate

Flagship course improves understanding of MS diagnosis globally

Our online course MS Symptoms and Diagnosis returned for World MS Day 2026 to improve people's understanding of the process and impact of diagnosis. The free course, a collaboration between the MS Research Flagship and MS International Federation and expressly curated for the World MS Day theme 'My MS Diagnosis', engaged 2,492 participants from 132 countries. More than half of participants were healthcare professionals, highlighting the course’s value as an educational resource for the medical community.

→ Explore our free MS online courses

MS CENTRE OF RESEARCH EXCELLENCE UPDATE

Based within the MS Research Flagship, the Multiple Sclerosis Centre of Research Excellence (MS-CRE) combines expertise in neuroscience, genetics, bioinformatics, drug development and clinical trials to accelerate the discovery, evaluation and translation of new treatments for progressive MS. 

Want to see how this work is making a difference? We've updated our website with the latest information on MS-CRE research progress, consumer and community involvement activities and initiatives to support the next generation of MS researchers.

→ Learn more about the MS-CRE's work

The MS-CRE is funded by the Australian Government National Health and Medical Research Council

NOW RECRUITING

STOP-MS antiviral trial

STOP-MS is investigating whether antiviral medications can slow disability progression in people with progressive MS by targeting the Epstein-Barr virus (EBV). The study focuses on two antiviral drugs that are already approved in Australia for treating other viral infections and have shown effectiveness against EBV in laboratory studies. Participants will receive either one of these drugs or a placebo for comparison. The study is recruiting now at Menzies.

→ Register your interest

STOP-MS is led by Griffith University and funded by the Australian Government, Medical Research Future Fund

FREE COURSE

This course is funded by the Australian Government, Medical Research Future Fund, Emerging Priorities in Consumer Driven Research.

COMING SOON

What does new MS research mean for you?

Join the ECTRIMS Patient Community Day on 23 October to hear how the latest MS research from around the world is shaping treatment, care and quality of life for people living with MS. 

→ Register for Patient Community Day

→ Find out more

RECOGNITION

New PhD advancing MS research

In August, MS Research Flagship PhD student Henok Derso presented his final research seminar. His project explored how family carers can be better supported to provide health information for people living with dementia or MS who experience cognitive or communication difficulties. Congratulations on completing your PhD, Henok.

Henok Derso

NEW FACES & FAREWELLS

Welcome

Farewell

Caitlin Pilbeam joined the Flagship Consumer Advisory Committee in August 2024 and has dedicated nearly 20 hours to consumer involvement activities since then. We thank Caitlin for her contributions and wish her all the best as she heads off on parental leave.

FLAGSHIP IN NUMBERS

Published studies

In 2026 to date 31 papers published in peer-reviewed journals have been co-authored by MS Research Flagship researchers. 

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We acknowledge the Palawa/Pakana and Gadigal people, the Traditional Custodians of the land upon which we live and work. We honour their enduring culture and knowledges as vital to the self-determination, wellbeing and resilience of their communities.