Leukodystrophy Australia’s Family Advocate is passionate and committed to supporting people impacted by leukodystrophy. A qualified social worker and registered nurse, she has extensive experience in the Disability and Health sectors. She feels privileged to be invited into people’s lives and listen to their powerful stories. She endeavours to provide them with a respectful and safe space to be heard. Our Family Advocate is available to speak with individuals, families and others right across Australia. Feel free to contact her via telephone and email, Skype or Zoom sessions may then be arranged.
Our Family Advocate may:
- Listen and provide support when you are experiencing current or ongoing challenges associated with the impact leukodystrophy is having on your life.
- Provide advocacy at an individual or systemic level.
- Link you with appropriate service providers so you may achieve the best outcomes throughout your leukodystrophy journey.
- Ensure you and your family are treated with respect and dignity.
Secretary & Acting Treasurer
Bronwyn counts herself lucky to be a part of the Leukodystrophy Australia team. Her contact with individuals and families living with leukodystrophy, working with committee members, the Family Advocate Program and wonderful volunteers, are what she believes makes her job so heart-warming. The remarkable and diverse connections with all stakeholders, as they support us, has been a rewarding and educational experience.
Committee of Management
The organisation is thankful to its past and present committee members and volunteers, many of whom are traditionally long-term members/supporters. Without such dedicated personnel, the organisation could not function. Enquiries and interest on ways to be involved are always welcome.
Kellie joined the committee in 2014 and has worked tirelessly to raise awareness, funds and support in Tasmania. Additionally, Kellie joins the Melbourne committee members when possible to support Leukodystrophy Australia events. Kellie’s positive approach always encourages the rest of the team and she is the epitome of the ‘quiet achiever’.
Committee Member & Scientific Advisor
Dominik joined the committee in 2019. He is a neuroscience researcher working in the Translational Neuroscience Facility at the University of New South Wales in Sydney. Dominik’s research focuses on the early childhood leukodystrophies HBSL and Canavan disease. To increase the understanding of these leukodystrophies, he and his team are creating genetic disease models and develop gene therapy strategies for the treatment of leukodystrophies. With his scientific background Dominik serves as a scientific advisor to the committee.
Earl is the longest standing member of the current committee. He brings a deep knowledge of the impacts of leukodystrophy on a family caring for those with complex needs. He has a strong awareness of the never-ending challenges placed in the path of individuals and families. Earl has invaluable skills in different areas including IT, fundraising, event management, liaison with corporate and health sectors, disability care.
Hala brings a wealth of knowledge to the committee with her experience in managing companies focussed on life saving medicines. She has interest in rare conditions and has played a critical role in bringing medicines for rare conditions onto the Australian market. Her interest in leukodystrophies began over 8 years ago through her work to bring a product that has proven to be effective in improving the symptoms for some leukodystrophies.
Tracy joined the committee in 2019, she has experience in the aged and disability sector and an understanding of Leukodystrophy. She is passionate in helping those living with Leukodystrophy and joined the team to help with fundraising for Leukodystrophy Australia and for research into Leukodystrophy.
Medical and Research Advisor
Royal Children’s Hospital
Dr Stutterd is a Clinical Geneticist at the Murdoch Children’s Research Institute (MCRI) and lecturer in Clinical Genomics at the University of Melbourne. She trained in paediatrics and clinical Genetics at Royal Children’s Hospital (RCH) and Victorian Clinical Genetics Services (VCGS), and completed a neurogenetics fellowship at MCRI/RCH. Her PhD work focused on investigating the genetic causes of rare neurological disease.
Sr Julie Thomas OAM
The Australian Leukodystrophy Support Group was founded in August 1992 by Sr Julie Thomas OAM (a Leukodystrophy sufferer herself) with the aim of providing information and support to patients and families across Australia, affected by this debilitating group of genetic diseases. Julie’s vision and tireless efforts in shaping the organisation and supporting so many individuals and families impacted by leukodystrophies are the reason the organisation exists today as a National body. Sr Julie was awarded an Order of Australia Medal in January 2001 for her exceptional services to Australians affected by a rare and usually fatal neurological disorder, Leukodystrophy.
‘Hearing the news, they just can’t believe it; they are in a state of shock, sometimes denial. I know in my heart, the group will continue to grow and be an effective resource for all families linked with Leukodystrophy. Families will continue to be taken care of compassionately and respectfully – which is what they deserve” – Sr Julie Thomas OAM (2012)
Lived Experience Series 2019
Gary, John McKeon, Matthew & Young Jack
Leukodystrophy Australia Ambassadors John Olsen, Gary Dawson OAM & Matthew Laverty are special people indeed. They all recognise the important role the organisation serves and have performed amazing feats in support.
In 2008, John Olsen, a member of the Geelong Lions Club, undertook The Longest Walk for an Aussie Kid, to raise funds for two groups (one of which was the Australian Leukodystrophy Support Group). The walk was a marathon 4,778 kilometre, record breaking west to east, solo walk (pushing a custom ‘wheelbarrow’) across Australia, followed by a further 1,783 kilometre ‘stroll’. John’s walk took him from Steep Point in WA eastward across the 4,778 kilometres of arid desert and the Great Dividing Range to the eastern most point of the continent at Byron Bay NSW and then a further 1,783 kilometre walk southward and home from Byron Bay to Geelong. John completed the walk in 200 days, raising over $60,000 for the organisation.
In 2016, John completed his Long Walk for Leukodystrophy – a 5,000 km diagonal crossing of Australia – a massive effort – and in doing so, raised important funds for Leukodystrophy Australia. We hear John is considering yet another crossing in the future!!
In June 2019, John was recognised for his efforts and awarded an Order of Australia – Congratulations and well deserved John Olsen OAM.
Gary ‘Smokey’ Dawson (OAM) & Matthew Laverty run a golf series called The Charity Challenge, a unique Corporate Golf Series in support of low profile local Charities. Having heard about the Australian Leukodystrophy Support Group and its work, Gary & Matthew ran their first golf event for the organisation in 2009 in Sydney. Since that event, Gary & Matt have supported the organisation in many ways, not only via continued fundraising Golf Days, but also through the all-important networking of their Corporate Supporters. Their support has been integral in allowing the organisation to continue to do what it does – as well as awareness raising of what leukodystrophies are and the work the organisation does. The Sydney Golf day continues to run and expanded to Melbourne in 2014. Corporates, friends and supporters plus The Charity Challenge’s own Ambassadors, Sponsors and golfers are to be thanked for their generous support.