Over the past three years, MS Australia’s Lived Experience Expert Panel (LEEP) has grown quickly and made a real difference across the organisation. What began as a small group of 20 is now a strong national panel of 47 people living with MS, carers and supporters who share their real‑life experience to help guide research, advocacy, policy and public awareness. Their input is helping make sure MS Australia’s work reflects what really matters to the MS community.
Between January 2024 and August 2026, LEEP members were involved in nearly 160 engagement activities and made 657 individual contributions. Many activities involved more than one LEEP member, with an average of four members contributing to each activity. Through this work, LEEP brings lived experience and expertise to MS Australia, the MS research community and organisations across the disability, health and medicines sectors. LEEP members provide community insight that helps shape submissions, research priorities, resources, campaigns and public awareness.
Key impact highlights
- Growing national reach: LEEP expanded from 20 to 47 active members, strengthening MS Australia’s ability to draw on diverse lived experience from across the MS community and across Australia.
- Strongest impact areas: Research, submissions and document review accounted for 57 per cent of all recorded involvement, showing LEEP’s strongest contribution in generating evidence, informing policy and improving practical resources.
- Influence on policy and advocacy: LEEP members helped shape 23 MS Australia submissions by sharing the real-world experiences of people living with MS and carers, strengthening the evidence and recommendations used in advocacy work.
- Visible public contribution: LEEP insights and stories strengthened MS Australia’s World MS Day activities, featured across 14 Raw Nerve podcast episodes and helped raise public awareness of MS.
- Breadth of engagement: LEEP project involvement spanned 17 categories, with lived experience expertise including:
- Submissions: providing lived experience input and case studies to MS Australia’s policy submissions to government inquiries and consultations
- Research: reviewing and providing feedback on funding submissions, research questions, survey design and the inclusion of people living with MS; providing lived experience input to research, as members of a research team or reference group; and participating in clinical trials and other research studies.
- Resources: providing feedback and case studies for MS Australia resources and MS or disability resources developed by external organisations
- Events: sharing their lived experience through speaking at MS Australia events and external events including universities, pharmaceutical companies and other workplaces
- News: sharing their lived experience through MS Australia’s MS Wire newsletter and social media channels
- Podcast: appearing as guests on MS Australia’s podcast The Raw Nerve.
Impact of lived experience
LEEP is helping MS Australia embed lived experience in a more consistent, meaningful and practical way. Through their contributions to research, policy submissions, resources, campaigns and public awareness activities, LEEP members bring humanistic insights that strengthen evidence, shape recommendations and help ensure MS Australia’s work reflects the real-world experiences of people living with MS and carers.
LEEP’s broader impact is reflected in the culture of lived-experience leadership it supports – within MS Australia and beyond, through connections with the MS research community, advocacy partners and organisations across the disability, health and medicines sectors.
Learn more about the LEEP
LEEP Quotes:
“When you look at the numbers – 650+ contributions spanning submissions, research projects, and advisory groups – lived experience at MS Australia is definitely not a tick-box exercise. Panel members actively shape policy and guide research daily. Crucially, this goes far beyond surface-level metrics like views, clicks, and impressions. Awareness isn’t action, and a story alone doesn’t create real behaviour change.” – Sarah Flaim, LEEP Member
“It means more than many people realise to feel that your knowledge, experience and perspective genuinely matter – especially in a space filled with so many unknowns. The creation of the LEEP has been a true game changer, providing meaningful opportunities for people with lived experience to contribute at multiple touchpoints that can influence positive outcomes. Whether through advocacy, policy review and feedback, event participation or peer support, the opportunity to make a positive difference helps counter some of the challenges of living with MS. As an original LEEP member, I feel immense pride when I reflect on how much we have achieved in such a short time.” – Jo Beard, LEEP Member
Why the LEEP? Because it works! We share the same core values, while each bringing something different to the table. Our lived experience, perspectives, expertise and strengths come together with one shared purpose and that is, to make a real difference. And that we do. I’m proud to be a LEEP member and genuinely excited to see the meaningful change we continue to create.” – Rowena Auchterlonie, LEEP Member
“Being one of the original members of MS Australia’s Lived Experience Expert Panel means standing at the very beginning of something that is reshaping how MS is understood. I get to help ensure that decisions affecting people with MS are informed by those who live with it every day. This assists policy, research and advocacy to be informed by the truth of our experiences. The LEEP platform ensures people with MS are not just consulted but genuinely heard. I’m proud to think my involvement in the LEEP means I’m helping to shape a better future for our MS community. I look forward to the advances still to come for people with MS.” – Julie Lonsdale-Light, LEEP Member
“When I reflect on the achievements of the LEEP over the past three years, I can see how powerful lived experience can be. We are no longer sitting in the back row watching, we are now standing at the front, doing the talking and people are listening. Our lived experience is shaping real decisions and influencing positive change for people like me who live with MS. It feels good to know our voices are being heard and making a difference. I’m excited to see what we will achieve next.” – Rachel Fallis, LEEP Member
Help shape our work: join the LEEP
MS Australia is currently inviting expressions of interest to join the LEEP through a targeted recruitment round to diversify the experiences and perspectives represented on the panel.
Applications close at 5pm AEDT on Monday 30 November.
