OUR PEOPLE, OUR STORIES
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)
Today, the organisation is run by a strong volunteer committee drawn from parents and supporters nationally.
Sr Julie Thomas CSB OAM
2016 - Biography - click here
AMBASSADORS - OUR INSPIRATION
JOHN OLSEN OAM
JOHN & HIS 'WHEELBARROW'
GARY (SMOKEY) DAWSON OAM & MATTHEW LAVERTY
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.
COMMITTEE MEMBERS & VOLUNTEERS, PAST & PRESENT
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.
PARTNERS & SUPPORTERS
The organisation acknowledges with heartfelt thanks, the various stakeholders who have been involved in the past and are currently associated with it.