Scleroderma Victoria Incorporated began in 1979 to support people with Systemic Sclerosis.
Our mission is to:
- provide support to those living with scleroderma, their families, carers and friends
- promote community awareness of scleroderma
- support research into better treatments for all people with this chronic illness
Scleroderma Victoria is run by a Committee of dedicated volunteers, and you can learn more about them below.
Our Committee
Amanda Lawrie-Jones – President
Amanda Lawrie-Jones has served as President of Scleroderma Victoria since 2015, bringing extensive leadership experience across multiple boards and a strong commitment to disability inclusion. She is the founder of Accessible Action, a consultancy that works with organisations to embed inclusive practices for people with disability across employment, customer experience, and community engagement.
With lived experience of disability, both as a person with scleroderma and an amputee, Amanda is a sought-after trainer and speaker, known for using personal storytelling to build disability confidence and shift mindsets. Amanda is also currently the Chair of the Board for Scleroderma Australia.
Amanda is passionate about inclusive policy, disability inclusion, and procurement reform, and is also a proud finalist in the 2018 National Disability Leadership Awards and was nominated for the 2020 National Aspire Awards.
Outside of her advocacy work, Amanda enjoys travelling (especially to New York), going to the theatre, and has a well-known love of shoes.
You can contact Amanda at president@sclerodermavictoria.com.au
Iain Pizzey – Treasurer
Iain is a Chartered Accountant and joined the Committee in 2007 to fill the vacant position of Treasurer and to assist Scleroderma Victoria with its endeavours. Iain would like to increase fundraising activities and the financial position of the Association to assist with increasing medical research towards finding the cause of Scleroderma and to enable a cure for this condition. Iain is also the current Treasurer for Scleroderma Australia and we think he is a ‘treasure’ and a true gift to Scleroderma Victoria and Scleroderma Australia!
You can contact Iain at treasurer@sclerodermavictoria.com.au
Christine Youssef – Secretary
Christine Youssef joins Scleroderma Victoria in 2026 as the new Committee Secretary. Growing up on the Mornington Peninsula, living and working across the state, Christine is a Melbournian at heart who values the diverse communities it’s built on. A high communicator by nature, Christine is an experienced business administrator by trade who is motivated to innovating policies, growing mindsets, and improving accessibility and inclusion for people with disability. Her background of work ranges from working in the Victorian Government in some of the most challenging times to operating manufacturing and food service businesses.
With her own lived experience of disability, Christine has been a passionate advocate for better health outcomes and sought out roles and projects that increase awareness, expand support, and build confidence for improved decision making. She is no stranger to Scleroderma Victoria, having attended last year’s gala, and is excited to join the team and add her special touch to uplift the great work of the many talented people.
You can contact Christine at secretary@sclerodermavictoria.com.au
Louise Inglese – Vice President
Louise is a serial entrepreneur whose career has been defined by courage, resilience, and a commitment to turning challenges into opportunities. Having founded and successfully sold multiple businesses early in her career, she now serves as a Director of a proudly Australian manufacturing firm, where she continues to lead with vision and determination.
In 2016, Louise was diagnosed with Scleroderma. True to her nature, she met this life-changing challenge head-on, choosing to focus on action, advocacy, and positive outcomes rather than limitations. Her journey led her to become deeply involved with Scleroderma Victoria, where she proudly serves as Vice President and as Support Group Leader for the Mornington Peninsula/Westernport Support Group.
Through both her professional and personal life, Louise is driven by a belief that every challenge carries an opportunity for growth, connection, and impact. She is passionate about supporting others, building strong communities, and creating meaningful change.
You can contact Louise at vicepresident@sclerodermavictoria.com.au
Janelle Blight – Committee Member
Janelle currently lives in Geelong Victoria, although grew up in the Mallee district near Swan Hill.
Due to the challenges of Scleroderma, Janelle no longer works and has graciously offered to assist Scleroderma Victoria as the new volunteer Support Group Coordinator. Her background comes with experience as the Deputy Environmental Services Manager at Geelong hospital, and she was lucky enough to have some great life adventures in living overseas, including both Scotland and Washington DC. Janelle still loves to travel, when her health permits it, although now she is happy to keep her journeys within Australia.
Janelle is an avid AFL supporter, regularly going to see her mighty Cats (Geelong) play. Her hobbies include taking care of her thriving vegetable garden for healthy eating, and she enjoys mindfulness, which helps to ease chronic pain. Janelle also loves going to the movies and music concerts and has a keen interest in genealogy.
Pre-Covid, Janelle was running the Geelong Support Group and is very keen to get this back up and running again. After completing the SPIN-SSLED course through the Scleroderma Patient Intervention Network (SPIN), she is very keen to provide her knowledge and experience in this area to our support all Support Group Leaders.
Janelle has been a NDIS participant for some years and is willing to offer support and guidance where she can. Feel free to reach out to Janelle at supportgroups@sclerodermavictoria.com.au.
Bronwyn Robinson – Committee Member
Bronwyn Robinson is a passionate fundraiser and community advocate who channels her lived experience with scleroderma into powerful action. By day, she runs Buds n Roses Florist in Melbourne, but her true impact shines through her tireless efforts to raise awareness and funds for scleroderma research and support. As a member of the Scleroderma Victoria Committee and leader of the Inner Southeastern Suburbs Support Group, Bronwyn has spearheaded fundraisers and campaigns, raising over $15,000 through creative events including high teas, dinners, flower drives, and more. Her dedication, creativity, and community spirit make her a driving force for change, and a source of hope for many.
You can reach out to Bronwyn at fundraising@sclerodermavictoria.com.au
Mandy McKirdy – Committee Member
Based in Melbourne, Mandy is an experienced IT Project Manager who shares her home with her beloved Golden Retriever, Georgie, and proudly supports the Collingwood Football Club.
Mandy’s connection to scleroderma began through her late husband’s diagnosis, which sparked her passion for advocacy after experiencing firsthand the challenges of accessing information and support. Now a committed member of the Scleroderma Victoria Committee, Mandy uses her professional skills to raise awareness and funds for research, aiming to improve outcomes for those living with scleroderma and their families.
You can contact Mandy at sunflowerheroes@sclerodermavictoria.com.au
Alana McKirdy – Committee Member
Alana joined our committee in 2023 to assist us in raising the Victorian community’s awareness of scleroderma. Having witnessed her father battle with scleroderma for 10 years, Alana understands the journey that the loved ones with scleroderma go through. She has completed her law degree and has a passion for personal injury law. Alana aspires to use her life experience and legal expertise to assist everyday Australians with accessing compensation where they have developed conditions, like scleroderma, silicosis, and asbestosis, that are linked to their past and current occupations.
You can contact Alana at socialmedia@sclerodermavictoria.com.au