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 was appointed as our President in late 2015, and brings with her an array of experience on several Boards. As an experienced HR Professional and Access and Inclusion Consultant, Amanda runs her own business, Accessible Action, and works with organizations to implement strategies, policies and processes to enable inclusive environments for employees, customers and community members with disability. In having lived experience of disability (Scleroderma and Amputee), Amanda enjoys facilitating training to open peoples minds with personal stories to enable disability confidence. Her additional Board experience consists the current Deputy Chair of Arts Access Victoria, a Member of the Victorian Disability Advisory Council (Reporting to the Minister for Disability – Hon Luke Donnellan), and the President of Scleroderma Australia. Amanda also loves to travel, especially to New York and has a serious shoe addiction. In 2018, Amanda was a Finalist in the National Disability Leadership Awards and nominated in 2020 for the National Aspire Awards.

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

Jennene Caton – Secretary

Jennene joined the committee in 2014 and accepted the role of Secretary in March 2015. She is a former Senior Sergeant in the Victoria Police Force. She took early retirement in March 2014 due to Scleroderma. During her 26 year career she worked at busy suburban police stations, the Crime Department and State Intelligence Division. She has a Masters of Leadership and Management (Policing) from Charles Sturt University.  She is spending her retirement raising awareness about Scleroderma.  Along with the role of Secretary, she is also our office Administration Assistant.

You can contact Jennene at secretary@sclerodermavictoria.com.au

Louise Inglese – Vice President

LouiseLouise could easily be called a serial entrepreneur, with a passion for taking professional challenges head on and looking to create the best outcome for each opportunity that is presented to her. Having started and sold several businesses in her early career, she is currently a Director of a proudly run Australian manufacturing firm. Louise was diagnosed with Scleroderma in 2016 and like in life, her passion to make the best of every opportunity took the challenge head on and looked for ways to improve her situation. She promptly became a member of the Scleroderma Victoria committee and has recently stepped into the role of Vice President.

You can contact Louise at vicepresident@sclerodermavictoria.com.au

Belinda McMaster – Committee Member

BelindaBelinda joined the committee in November 2014 to support and enable Scleroderma Victoria in our Governance portfolio to ensure that our organisation remains relevant, compliant and up to date as she is a Lawyer with the Australian Government.  Belinda has a special interest in helping people with Scleroderma as her mother (Jennene) has been living with the condition for many years.   She is currently working towards her Masters of Law through the University of Melbourne.  Belinda enjoys travelling to new and interesting places.

You can reach Belinda at governance@sclerodermavictoria.com.au

Mark Langhorn – Committee Member

MarkMark has recently joined the committee because he wants to raise awareness of Scleroderma and explore pathways for greater research and advocacy for the Scleroderma community. In 2019 Mark dipped his toe into raising funds for Scleroderma Victoria, raising over $4000 whilst growing his hair and then coloring it purple.  As you can see, it would have taken him some time to grow his hair!  He is inspired by his wife Melissa, who was diagnosed with Scleroderma in 2015.

Mark is an Inspector with Victoria Police and will use the experience he has gained working across government and with the community to advance the work of Scleroderma Victoria.  Holding a Master of Research and Master of Public Policy and Administration, he intends to utilise his skills and experience as an advocate for Scleroderma Victoria.

Mark and Melissa have eight children and two gorgeous grand-daughters, which makes for a busy life!

You can contact Mark at membership@sclerodermavictoria.com.au

May Adams – Newsletter Editor

Close up of May holding her head in her hand and wearing glasses

We welcome May Adams as our newsletter editor for Scleroderma Victoria! May lives in Tasmania and has 3 adorable cats and is studying a Master of Information Management – with the hope of becoming an archivist. May has an undergraduate background in history and archaeology which she completed with an honour’ s thesis on Australian sex workers rights organisations in the 1990s. May is very open to knowing and understanding that our newsletter is for our members, and is very open to it being your space. Feel free to reach out to her at newsletter@sclerodermavictoria.com.au  if you have any thoughts, suggestions or contributions you’d like to make to the newsletter.

Janelle Blight – Committee Member

Scleroderma Victoria would like to welcome Janelle Blight to our Committee. 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.