Archive
Cassie and Tyler
Hello to all our leukodystrophy families. My name is Cassie, and this is my son Tyler. Tyler was diagnosed with Metachromatic Leukodystrophy late infantile (MLD) when he was 2.5 years of age. He is now 10 years old, and the absolute apple of my eye. It has been a...
The Genetic Lottery by Katie Cincotta
An Introduction to Gene Therapy for Families Living with Canavan Disease
Safe in Sound Online Concert Series
Introducing Safe in Sound’s new online concert series. They are offering free online performances to families anywhere in Australia affected by the Covid19 pandemic. For more information please contact Bronwyn at Leukodystrophy Australia or S.I.S directly on...
Landmark reforms to deliver on the promise of Australia’s NDIS
At last a response to the Tune Review and it is a positive for NDIS participants. Minister for the National Disability Insurance Scheme, Stuart Robert today announced the most substantial package of reforms to the NDIS since its establishment. The package includes...
Safe in Sound Online Concert Series 2020
Introducing Safe in Sound’s new online concert series. They are offering free online performances to families anywhere in Australia affected by the Covid19 pandemic. For more information please contact Bronwyn at Leukodystrophy Australia or S.I.S directly on...
2020 PMD Virtual Family Symposium – July 25, 2020
The organizers of the 2020 PMD Virtual Symposium would like to extend their most sincere thanks to all the families, clinicians, scientists, and honored guests who took the time to join us for the event. The recorded presentations are now available for those who...
The NAA issued a Joint Position Statement
The Neurological Alliance Australia has today issued a Joint Position Statement calling on the Australian Government to permanently extend the amendments made to MBS telehealth items introduced in response to the COVID-19 pandemic. These supports are currently...
Murdoch Uni Sydney Study Opportunity For Our Leukodystrophy Parents
Parents of children with Leukodystrophy, Parenting stress is an important issue to family functioning and wellbeing. It is especially important to this community where parenting stress is found to impact significantly on symptom severity, disability and quality of...
Funding for genetic testing to affect thousands of families.
Around 3000 Australian families are expected to benefit each year from the Federal Government’s listing of genetic testing for childhood syndromes and intellectual disability on the Medicare Benefits Schedule. Read More At Australian Genomics
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