Projects

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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.

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.

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.

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.

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.

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.

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

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

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.

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.

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.

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

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.

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.

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

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.

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

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.

LEEP members contributed their lived experience stories of diagnosis to MS Australia’s World MS Day 2024 My Diagnosis’ report that calls for faster MS diagnosis.

LEEP member Amanda 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.

LEEP member Laura 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.

LEEP member Julie 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.

LEEP members provided lived experience feedback for MS Australia’s submission on the NDIS Amendment Bill 2024 which calls for mandatory co-design in legislative changes, improved co-design approaches by the NDIA, an NDIS Review Implementation Advisory Committee, and clearer delegated legislation.

LEEP members provided lived experience feedback and case studies for MS Australia’s submission on the NDIS Provider & Worker Registration Taskforce which advocates for a tiered, streamlined registration process, exemptions for specific providers, and professionalisation of the disability workforce.

LEEP members provided lived experience feedback and case studies for MS Australia’s submission on MS Australia’s submission to the Cost of Living inquiry which highlights the financial challenges faced by individuals living with MS amid rising costs.

LEEP members provided lived experience feedback and case studies for MS Australia’s submission to the Joint Standing Committee on the National Disability Insurance Scheme which highlights the challenges faced by NDIS participants in rural, regional, and remote Australia.

A MS Australia news article on how the LEEP members are shaping the advocacy work of MS Australia and ensuring that the lived experience of people living with MS in embedded into MS Australia’s work.

LEEP members provided lived experience feedback and case studies for MS Australia’s submission to the Senate Inquiry into Menopause and Perimenopause which highlights the unique challenges faced by women with MS during menopause and perimenopause, including increased symptoms and overlapping health issues.

LEEP members provided lived experience feedback for MS Australia’s submission on the Australian Government’s response to the Disability Royal Commission, which emphasizes recommendations for a Disability Rights Act, inclusive health services, and improved disability discrimination laws.

LEEP members provided lived experience feedback and case studies for MS Australia’s submission on the Aviation Green Paper which advocates for improved air travel accessibility for people with disabilities, including those with MS