Family Advocate/Registered Nurse and Social Worker
Anne Patricia 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. Anne Patricia is available to speak with individuals, families and others right across Australia. Feel free to contact her via 0418 790 059 or firstname.lastname@example.org
- 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.
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.
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, and disability care.
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.
Dr Kylie Agllias
Kylie joined the committee in 2022 having previously been a Family Advocate for Leukodystrophy Australia. She has a PhD in Social Work and a number of related qualifications. Kylie is a Social Worker with a strong commitment to strengths-based, trauma-informed, family counselling, advocacy and research. She is particularly interested in supporting families to navigate the critical incidents and cumulative stressors that impact mental health and relational wellbeing. Kylie is a creative and empathic practitioner with a background in education, youth and family work.
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.
Abby is a biomedical science graduate with a passion for supporting individuals with genetic conditions. She has joined the Leukodystrophy Australia volunteer team as she pursues a career as a genetic counsellor.
Reach Social Media
Having personally seen what living with leukodystrophy looks like and the devastation it causes, it is an honour to help Leukodystrophy Australia to help those still living with this disease through social media.
Newsletter & Graphics
Massimo’s Mission Volunteer
Elle is the clinical research coordinator for the leukodystrophy and other white matter disorders clinic at the Royal Children’s Hospital and the Massimo’s Mission Leukodystrophy Program at the Murdoch Children’s Research Institute. As part of this research we have developed the Australian Leukodystrophy Registry and are using genomic technologies to help solve undiagnosed leukodystrophies. Elle completed a Masters in Genomics and Health, where her research focused on communicating genomic health information to individuals from culturally and linguistically diverse backgrounds. She loves speaking with families and working collaboratively with Leukodystrophy Australia.
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 2004, John Olsen, a member of the Geelong Corio Bay Lions Club, set out on his first long walk – from Cape York Peninsula (Queensland) to South East Cape (Tasmania), a 167 day and roughly 3,900 kilometre journey north to south (he hitched a ride on the ferry across Bass Strait).
In 2008, John 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, in memory of his partner Vida Brazianis (who passed away after suffering from leukodystrophy) and in support of Leukodystrophy Australia, 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.
In June 2019, John was recognised for his efforts and awarded an Order of Australia – Congratulations and well deserved John Olsen OAM.
In April 2022 at the age of 70 years young, John set off on his fourth amazing Long Walk ’10 Million Steps for Leukodystrophy’, an estimated 5,000 kilometre journey from Cape Leveque in Western Australia then south east to Cape Howe on the border of New South Wales and Victoria.
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.