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.

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 approved the by MS Australia Board on 31 March 2023.

The LEEP is made up of 59 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 59 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. 

Applications for LEEP membership are currently closed. The LEEP membership will be reviewed periodically and any if applications open for membership it will be announced on this website. 

Hannah Woolford

South Australia

Brigitte Sigl

New South Wales

Tayarra Smith

New South Wales

Janine Watson

Queensland

Lynn Ingram

New South Wales

Sienna Sullivan

Victoria

Julie Lonsdale- Light

Queensland

Amanda Grobbelaar

Queensland

Chloe Olsen

Tasmania

Nigel Caswell

Victoria

Brooke McGrath

New South Wales

Jo Beard

Victoria

Vanessa Fanning

Australian Capital Territory

Rowena Auchterlonie

Tasmania

Laura Birchall

Australian Capital Territory

Erin Brady

New South Wales

Mich de Waal

New South Wales

Alexandra Kitching

Temporarily living overseas

Sarah Flaim

Queensland

Kate Casey

Queensland

Jessica Worsley

South Australia

Rachel Fallis

New South Wales

Deanna Renee

victoria

Dr Amanda Kennedy

New South Wales

Susan Hyde

Western Australia

Tessa Colliver

South Australia

Louis Ziras

victoria

Deize Limax

victoria

Tennille Da Costa

victoria

Alex Mckay

QUEENSLAND

Tanya Rountree

queensland

Kylie Ujdur

QUEENSLAND

Rebecca Small

NEW SOUTH WALES

Jody Cypelt

Western Australia

Connie Janiszewski

New South Wales

Rachel Kerr

QUEENSLAND

Lauren Borlace

New South Wales

Sally Irwin

New South Wales

Jodi Martin

New South Wales

Alison Reece

Victoria

Kirrily Careedy

Victoria

Samantha Billington

Queensland

Tracey Bettens

South Australia

Gavin Harper

Western Australia

Steven Koutsodontis

Victoria

Michael Butler

New South Wales

Anne Cooper

Western Australia

Carol Cooke

Victoria

Simone Rutherford

Victoria

Maria Papadimitriou

Western Australia

Connie Alfonso

Victoria

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 

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