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

Miriam Tawadros – Committee Member

Miriam Tawadros squareMiriam and her family know the journey of Scleroderma all too well. Miriam’s father has the condition, and she is committed to supporting her family and others with scleroderma whilst giving back to her community. Through her philanthropic business she has assisted Scleroderma Victoria in making our new candles which are for sale on our website, and joined our Committee to help us raise awareness and funds. Her career as a registered nurse with a paramedicine bachelor degree will be a highly valued addition. Miriam enjoys photography, reading, learning, travelling and volunteering overseas.

You can reach Miriam at events@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

Jenny Banwell – Committee Member

Headshot JennyJenny was born and raised in Gippsland is passionate about her work in early childhood as a Co-educator at a local kindergarten. Her diagnosis of Scleroderma in 2007 has meant she has had to cut down her hours to part-time work, however this did not stop her from running a fundraising and awareness event at the Kindergarten where she held a pyjama day. Jenny is committed to continuing her enthusiasm in supporting Scleroderma Victoria and hopes to set up a local support group to help others. Camping is one her favorite things to do with her 2 children, as well as spending time at the beach. 

You can reach Jenny at supportgroups@sclerodermavictoria.com.au