an initiative of

“Sunflower Heroes” is an initiative of Scleroderma Victoria to further promote, create awareness and fundraise for Scleroderma.

It’s main emphasis is appealing to those who DON’T have Scleroderma, but have a family member or a friend suffering from the disease or simply want to be part of a good cause. Of course, those that have Scleroderma can also be “Sunflower Heroes”. The more the merrier!

Funds raised for Scleroderma Victoria are used in the following ways:

Research

Research is constantly undertaken to find the keys to Scleroderma and to improve medications and therapies.

Much research is undertaken here and in conjunction with medical institutes around the World.

We’d love it all to be funded, but Govt subsidies are limited so organisations such as Scleroderma Victoria step in to provide funds where none would be available.

Nurses

Scleroderma Victoria assists with funding for three Scleroderma Clinical Nurses located at St Vincent’s Melbourne, Monash Medical Centre Clayton  and Royal Hobart. The nurses  provide vital and immediate care to people with Scleroderma and contribute to international research and practice on wound management and other symptoms.

Each nurse plays an important role in managing the various symptoms of Scleroderma patients and they provide beneficial advice and education on wound care, clinical appointments and medical tests. Another major responsibility is to collect and maintain information in the Scleroderma database. This information is vital to the ongoing improvement of treatments and healthcare available to scleroderma patients.

Support

Scleroderma Victoria provides support for it’s members in a number of ways.

Support Groups operate through metropolitan and regional Victoria and these support groups provide an invaluable avenue for members to meet, socialise and discuss issues and tips on how to manage their Scleroderma.

Oxygen Concentrators are also provided to those who have significant lung and breathing issues. These machines are hired to members at a minimal cost per month and provide the individual with a option that enables them mobility where they may have none.

Administrative help is also close at hand whereby people with Scleroderma, inclusive of family and friends, can make contact with any queries and concerns they may have. Valuable written resources are also distributed where requested.

Equipment

Oxygen Concentrators are provided to those who have significant lung and breathing issues.

These machines are hired to members at a minimal cost per month and provide the individual with a option that enables them mobility where they may have none.

Quality of life becomes an issue as the disease progresses and severely impacts the individual in a number of ways. Autonomy and freedom of movement becomes an issue to the point that those with severe lung issues are house bound.

Oxygen Concentrators provide an aid to make breathing easier, but as they are mobile, allows the user to have some form of ability to move about and even socialise.

As a non-profit organisation, Scleroderma Victoria is run purely by volunteers, who donate their time and effort to ensure the goals and objectives of the organisation are met. This also includes the “Sunflower Hero” initiative.

Scleroderma Victoria is overseen by a hard-working Committee who bring a range of skills and knowledge across various industries and use these to progress the promotion, awareness and fundraising of Scleroderma.

To put a human face to our Committee, we introduce them below:

Amanda Lawrie-Jones

Amanda Lawrie-Jones

President

Amanda was appointed as our new President late in 2015, and brings with her an array of experience on several other Boards and has a strong passion for an inclusive society. As an experienced HR Professional and Diversity & Inclusion Consultant, Amanda works as a Consultant to implement policies and processes within organizations that enable an inclusive environment for employees, customers and community members with disability. Amanda also loves to travel, especially to New York and has a serious shoe addiction.

Belinda McMaster

Belinda McMaster

Vice President

Belinda joined the committee in November 2014 and accepted the role of Vice President in November 2015. She has a special interest in helping those with Scleroderma as her mother (Jennene) has been living with the disease for many years. Belinda works full time in the public service and has recently completed her Bachelor of Laws through Deakin University. Belinda’s focus as the Vice President is to review our policy and procedures to ensure that our organisation remains relevant and up to date. When she is not working or studying Belinda enjoys travelling to new and interesting places.

Iain Pizzey

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!

Jennene Caton

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.

Gene Swinstead

Gene Swinstead

Committee Member

Gene joined Scleroderma Victoria in 2011 and was President from 2013 to 2015 before resigning this position to take up the role of President of Scleroderma Australia. His continuing mission is to raise awareness of Scleroderma and to pursue funds for research towards finding a cure. Gene facilitates workshops about Scleroderma to medical students at Monash University. Gene joined us after retiring as a newspaper and television executive, working across all states of Australia and overseas. Gene has suffered Scleroderma for 30 years and he knows what it’s all about. Gene loves cooking, gardening, horse racing and playing golf. Gene is married with three daughters, and is also kept company by the family dog ‘Molly’.

Judy Browning

Judy Browning

Committee Member

Judy Browning is a member of Scleroderma Victoria for over 20 years taking on the role as the Bendigo Support Group Coordinator. Judy is now the Regional Liaison Officer for all support groups in Victoria and joined the Scleroderma Victoria Committee in 2013 and attends our meetings by teleconference. Judy monitors the Scleroderma Australia Facebook group and provides support to our online community.

Jane Rhyder

Jane Rhyder

Committee Member

Jane joined the committee in 2015 as a representative running a support group in Melbourne. The NE Support Group was started by Jane in 2011 to help those living with scleroderma in her area. The group meet regularly throughout the year offering members the opportunity to spend time together and share their journey with scleroderma. Jane was diagnosed with scleroderma in 2001, and is currently working as a part-time medical receptionist. Jane is a volunteer playgroup leader at her local church and enjoys spending time with her husband Andrew and two adult sons.

Sally Westbury

Sally Westbury

Committee Member

Sally was diagnosed with Scleroderma in 1999 and joined the committee when she established a support group in Hobart, early 2015. Sally has a varied work background including eight years as an Army Officer, fifteen years in education and two years as a counsellor. Sally has spent many years living and working overseas. With a husband who is still based in Hong Kong for work, she now spends a good deal of time travelling between the two countries. Sally has two sons and enjoys time with family and friends. Her interests include travel, walking, reading, gardening and painting.

Bruce Mannion

Bruce Mannion

Committee Member

Bruce has just recently joined Scleroderma Victoria. Due to on-going health issues he has just recently retired. Bruce’s past working life has been many and varied, mainly in the sports and event areas. From starting up the initial Australian Baseball League he moved on to the the Hawthorn Football Club, where he was responsible for all Corporate and Commercial sponsorship and marketing arrangements. From here he undertook a short term contract to establish the marketing and sponsorship for the Fremantle Football Club prior to its inaugural season. Returning to Melbourne, he started his own business in the events area and was active in this for 15 years. Bruce has one daughter and loves fishing, football, reading and coffee!

© 2017 Scleroderma Victoria Inc (All Rights Reserved)