MS Australia is now calling for expressions of interest to diversify the LEEP.
MS News

20 October 2026

Over the past 3 years, MS Australia’s Lived Experience Expert Panel (LEEP) has grown quickly and made a real difference across the organisation.
MS News

8 October 2026

This World Mental Health Day 2026 (10 October), members of our Lived Experience Expert Panel (LEEP) share their experiences of managing mental health while living with MS, including seeking professional support, staying active, connecting with others and adapting to changing circumstances.

2 October 2026

Drawing on the lived experience of LEEP members, MS Australia’s submission to the Department of Infrastructure, Transport, Regional Development, Communications and the Arts recommends nationally consistent Aviation Disability Standards. Across the whole journey, planning and booking, at the airport and…

1 October 2026

MS Australia supports reforms to NDIS Support Coordination and Connection services that improve quality, safeguarding and consistency while preserving participant choice and access to specialist expertise. This submission recommends a mixed model of generalist SCC and specialist SCC+ services, flexible…

1 October 2026

MS Australia supports NDIS access reforms that are fair, transparent, disability-informed and centred on lived experience. This submission calls for access decisions to reflect the real-world impact of disability, particularly for fluctuating and degenerative conditions such as MS, and recommends…
LEEP

29 September 2026

LEEP member, Julie shares her experience of MS diagnosis and how she’s learned to manage her health over the years. “Having MS means I am constantly “assessing” my body and listening to how I feel. I try not to do too much and take rest breaks as needed.”

11 September 2026

MS Australia submission to the Department of Health, Disability and Ageing on the commissioning of Supported Independent Living (SIL)supports improving the quality, safety and sustainability of SIL, but argues commissioning should be targeted where existing arrangements are failing. The submission…

31 August 2026

MS Australia’s submission to the Department of Health, Disability and Ageing on the Inclusive Communities Fund highlights the need for the Fund to support genuine, safe and lasting community participation for people with MS and other complex disabilities. Drawing on…

26 August 2026

MS Australia’s submission to the Australian Sports Commission and the University of Queensland draws on lived experience from the LEEP and broader MS community to highlight the barriers people with MS face in sport, including fatigue, heat sensitivity, cost, accessibility…
MS News

26 August 2026

Through the lens of living with MS or caring for someone with MS, MS Australia’s lived experience expert panellists Rachel Fallis and Rebecca Small contemplate a future where family screening for MS was available….

30 July 2026

MS Australia’s submission to the Support at Home Program inquiry outlines that the program does not adequately meet the needs of older people living with disability, including people with MS. It highlights insufficient funding, lack of disability-specific supports, high co-contributions,…
MS News

29 July 2026

Susan reflects on her journey with MS from a young age, her diagnosis story and the importance of building a strong support network.

17 July 2026

MS Australia’s submission to the National Transport Commission on the Assessing Fitness to Drive Standards, informed by the experiences of LEEP members, recommends that the updated Standards better recognise the variable and fluctuating nature of MS symptoms. The Standards should…
LEEP

23 June 2026

Tessa was 16 when she first experienced symptoms of MS. Over three decades later, she’s sharing her lived experience in a memoir: ‘Flying Solo’. Tessa explores the events that have shaped her life, shares her many travel adventures and the realities of living with MS.
MS News

16 June 2026

Living with MS and incontinence can be challenging, but it is also manageable with the right support, planning and practical strategies. We asked MS Australia’s LEEP about the ups and downs, and their top tips for managing this invisible symptom of MS.

10 June 2026

MS Australia’s submission on the Draft Revised Whole Journey Guide acknowledges the Guide’s intent and potential value. However, drawing on feedback from our LEEP, we recommend that the Guide be substantially revised to improve clarity, usability and accessibility, including through…

29 May 2026

MS Australia submission supports strengthening the NDIS but warns the Bill risks reducing rights and flexibility for people with MS. It highlights concerns with stricter eligibility, assessments, informal support assumptions, pricing changes, and decision-making powers. The submission calls for stronger…
LEEP

26 May 2026

Alex is a young professional from Brisbane living with MS. Diagnosed in 2021 at 25 years old, he reflects on his diagnosis, how it changed his life and the work he has done to thrive personally and professionally in the years since.
MS News

18 May 2026

To mark this year’s National Volunteering Week (18 – 24 May), MS Australia is taking a moment to celebrate the commitment of our Lived Experience Expert Panel (LEEP) members and highlighting what volunteering means to them.
LEEP

28 April 2026

10 years on from her MS diagnosis, Kirrily shares her approach to managing her MS with insights from her work as a Physiotherapist.
LEEP

25 March 2026

Anne was diagnosed with MS in 1985 and over the years, she’s learned to adapt and thrive even with the obstacles her illness has presented. She isn’t under any illusion that her life has been easy, but Anne takes pride in the life she’s built.

4 March 2026

MS Australia’s submission to the NDIA raises significant concerns about the NDIS proposed new framework planning rules. MS Australia calls for delayed implementation to allow for genuine co‑design, better staff training, participant review of draft support need assessments, removal of…

2 February 2026

MS Australia’s 2026–27 Pre‑Budget Submission seeks investment to address rising MS prevalence and growing economic impacts. It calls for funding to expand MS research and data infrastructure, increase access to MS Nurses, improve NDIS pricing and planning, strengthen the disability…
MS News

28 January 2026

Freemasons Tasmania generously provided funding for two Tasmanians with MS to attend our recent MS Research Conference. Recipients Carla and Rowena shared their unique perspectives of the conference with us.
LEEP

27 January 2026

Artist, advocate and content creator Deanna Renee uses creativity and humour to make MS feel less lonely and has become a recognised voice in the global MS community.
LEEP

26 November 2025

Muskaan shares her experience with MS diagnosis and the stigma of living with MS in her community. This deeply vulnerable article highlights cultural barriers to diagnosis disclosure and the importance of the lived experience voice.
MS News

26 November 2025

Travelling with MS can be incredibly rewarding, but it requires thoughtful preparation to ensure comfort, safety, and accessibility. With the right strategies, you can enjoy less stressful adventures and make the most of your journey.

17 November 2025

MS Australia’s submission to the Department of Infrastructure, Transport, Regional Development, Communications and the Arts advocates for the Transport Standards and guidelines to require regular disability awareness and inclusion training for all public transport staff; procedures for handling equipment disruptions;…
LEEP

29 October 2025

Kate shares her experience of living with MS, building a career in IT, mentoring women in her field and providing peer support within the MS community, perspectives she now brings to her role on the LEEP.

22 October 2025

MS Australia’s submission, informed by LEEP member experiences, recommends updating the Disability Discrimination Act to clearly define disability and discrimination, explicitly include conditions like MS, and introduce a positive duty requiring organisations to proactively prevent discrimination. It also calls for…

14 October 2025

Marking National Carers Week 2025, host Jeremy Henderson is joined by Lived Experience Expert Panel (LEEP) members, Rebecca Small and Chloe Colles, who represent the important cohort of people caring for family members with MS.

1 October 2025

Marking International Day of Older Persons 2025 celebrated annually on the first of October, we hear from MS Australia Lived Experience Expert Panel (LEEP) members, Vanessa Fanning and Gavin Harper, who represent the important cohort of older people living with multiple sclerosis.

1 September 2025

LEEP member Sally joins MS Australia’s podcast The Raw Nerve to mark Women’s Health Week and discuss women’s health, particularly as it pertains MS.

31 July 2025

An article featured in the MS Qld newsletter highlighting the ten Queensland based members of the LEEP and their contribution to the work of MS Australia.
MS News

24 June 2025

LEEP member Sarah is part of an independent panel reviewing MS Australia’s research program to ensure it remains relevant, forward-thinking, and focused on improving quality of life.

10 June 2025

LEEP member Alex joins MS Australia’s podcast The Raw Nerve to mark Men’s Health week and discuss men’s health, particularly as it pertains to the male lived experience of MS.

30 May 2025

LEEP members contributed to MS Australia’s World MS Day 2025 advocacy.
MS News

19 May 2025

LEEP member contributed quotes on their experience volunteering as members of the LEEP to this MS Australia news article celebrating National Volunteer Week.
MS News

23 April 2025

LEEP member Janine provided her lived experience of fatigue for this MS Australia news article on an online fatigue program for people living with MS.

6 February 2025

MS Australia’s 2025-26 Pre-Budget Submission advocates for strategic investments to support over 33,300 Australians living with MS. Key funding asks include $8M for a National MS Biobank, $300M for a Neurological Research Mission, and $550K for neurological data improvements; $6.5M…
MS News

29 January 2025

LEEP members Nigel and Erin co-authored a paper that included scientific and lived experience expert panel reviews to shortlist existing licensed therapies that could be used in later-stage clinical trials in MS.
MS News

18 December 2024

LEEP member Sarah provided the opening address at MS Australia’s Frontiers in MS Research symposium and shared her journey of receiving an MS diagnosis, highlighting the challenges of navigating a diagnosis of exclusion.

10 December 2024

LEEP member Sarah joins MS Australia’s podcast The Raw Nerve is a panel discussion from the Frontiers in MS Research Symposium on how emerging research and clinical trials are transforming the landscape of MS prevention, care, and treatment

15 November 2024

LEEP members provided lived experience feedback and cases studies for MS Australia’s submission NDIS pricing reform which emphasises the need for greater transparency, participant-focused flexibility, and improved funding structures.

15 August 2024

LEEP members provided lived experience feedback for MS Australia’s response to the NDIS Draft List of Supports draws on which emphasises that the list inadequately covers essential supports for people with MS, including air conditioning, assistive technology, and mental health services.

23 July 2024

LEEP member Deanna joins MS Australia’s podcast The Raw Nerve to mark National Pain Week 2024 and explore chronic pain and MS.
MS News

Entering adulthood with MS

13 June 2024

LEEP member Kate shares her story of MS diagnosis for MS Australia’s World MS Day 2024 advocacy. The 2024-2025 theme ‘My MS Diagnosis’, advocates for timely and accurate identification of MS.

11 June 2024

LEEP members Laura, Julie and Amanda join MS Australia’s podcast The Raw Nerve to mark World MS Day 2024 and to discuss theme of My MS Diagnosis, highlighting the barriers, to diagnosis and raising awareness by sharing the real stories people living with MS
MS News

MS symptoms at six years old

30 May 2024

LEEP member Sienna shares her story of MS diagnosis for MS Australia’s World MS Day 2024 advocacy. The 2024-2025 theme ‘My MS Diagnosis’, advocates for timely and accurate identification of MS.

The MS Australia Lived Experience Expert Panel was established in October 2023. The LEEP provides a formal mechanism to facilitate advice from experts across the MS community and support the work of MS Australia by: 

  • Enhancing the MS Australia advocacy agenda through evidence and advice from the MS community 
  • Ensuring the MS community has a strong voice into MS Australia’s governance, research, policy & advocacy, education & awareness 

The purpose, structure and processes of the LEEP are outlined in full in the LEEP Terms of Reference which were revised and approved the by MS Australia Board on 28 May 2026.

The LEEP is made up of 40-60 people living with MS or carers of people with MS.

The LEEP brings a wide range of lived experience and expertise to the work of MS Australia, the MS research community and a range of organisations across disability, health and medicines. Find out more.

LEEP Membership

The LEEP comprises 40-60 people living with MS or carers of people with MS. The Panel brings a wide range of lived experience and expertise to the work of MS Australia. 

The LEEP members each bring their unique experience and insight to the advocacy work of MS Australia and ensure that it has a strong lived experience focus. LEEP Members have  

  • Professional experience in the disability sector, professional sports, allied health, medicine, nursing, policing, finance, research, government and federal politics. 
  • Personal experience with inter-generational and familial MS, disability including the National Disability Insurance Scheme (NDIS) and aged care services, a wide range of MS treatments and medications and participation in MS research.  
  • Diverse backgrounds including younger people, older people, culturally and linguistically diverse, parents including single parents, people on the disability support pension, LGBTQI+ people and people living in regional and rural locations. 
  • Experience with disability advocacy, speaking publicly about MS, running peer support groups and raising awareness by sharing their MS story on social media. 

Learn more about our LEEP members in our regular Meet the LEEP column.

MS Australia is now calling for expressions of interest to diversify the LEEP. Find out more information and apply here.

filter by state
State

Connie Alfonso

VIC

Rowena Auchterlonie

TAS

Jo Beard

VIC

Samantha Billington

QLD

Laura Birchall

ACT

Erin Brady

NSW

Michael Butler

NSW

Kirrily Careedy

VIC

Kate Casey

QLD

Nigel Caswell

VIC

Tessa Colliver

SA

Carol Cooke AM PLY

VIC

Anne Cooper

WA

Jody Cypelt

WA

Rachel Fallis

NSW

Vanessa Fanning

ACT

Sarah Flaim

QLD

Amanda Grobbelaar

QLD

Brooke Hales

NSW

Gavin Harper

WA

Susan Hyde

WA

Sally Irwin

NSW

Connie Janiszewski

NSW

Lyndie Jewitt

NSW

Amanda Kennedy

NSW

Rachel Kerr

QLD

Deize Lima

VIC

Julie Lonsdale- Light

QLD

Jodi Martin

NSW

Alex McKay

QLD

Muskaan

VIC

Alison Reece

VIC

Deanna Renee

VIC

Tanya Rountree

QLD

Brigitte Sigl

NSW

Rebecca Small

NSW

Tayarra Smith

NSW

Sienna Sullivan

VIC

Kylie Ujdur

QLD

Janine Watson PLY

QLD

Hannah Woolford

SA

Jessica Worsley

SA

Louis Ziras

VIC

LEEP projects

The LEEP brings a wide range of lived experience and expertise to the work of MS Australia, the MS research community and a range of organisations across disability, health and medicines 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

Working with the LEEP

If you are interested in working with the LEEP please contact the MS Australia advocacy team at advocacy@msaustralia.org.au 

Learn more about how the LEEP can inform and enhance your work.

Before working with the LEEP please familiarise yourself with the MS Australia Guidelines for Stakeholders Engaging with the LEEP.

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Lived Experience Expert Panel