LIVE LIFE FOUNDATION
Our Impact
Live Life Foundation is changing what’s possible in paediatric care.
In partnership with The Royal Children’s Hospital, and thanks to the generosity of our supporters, we’ve helped hundreds of children and families access life-
changing neurological treatment.
We’re a registered not-for-profit focused on children with rare neurogenetic conditions, working to fast-track access to advanced therapies when timing matters most.
From pioneering research and emerging therapies to helping create Australia’s first dedicated gene therapy ward, every donation drives visible, meaningful outcomes.
We may be small, but our impact is big. Every dollar fuels progress, delivers results, and brings new hope to the children who need it most.
We need your help
The impact you can make
Left untreated, spinal muscular atrophy type one is the number one genetic cause of death in babies under the age of two.
An estimated 41,000 Australians live with one or more neuromuscular conditions.
Muscle and nerve disorders affect at least one in 1,000 children in Australia.
STORIES OF HOPE
Meet the kids who inspire us
These are the children driving our mission and who inspire us each and every day.
Meet Axel
“Axel is walking with a walker, pulling himself up on everything and opening every drawer. He’s already 13 months old, and without the treatment we would be halfway through Axel’s life - and that wouldn’t have been much of a life either,” Melitta shared.
The first few days of a child’s life are usually filled with joy, excitement, and an imagination full of endless possibilities. But for Axel’s parents, that was overshadowed by fear. Just days after welcoming their newborn, they were faced with a devastating diagnosis – spinal muscular atrophy (SMA).
SMA is a rare genetic condition that affects the motor neurons of the spinal cord, causing muscle weakness, damage, wasting (atrophy) and eventual loss of function. This disease, if left untreated, is the leading cause of death for children under the age of two. Gene therapy is giving Axel a newfound hope for the future.
Meet Jacob
Just six weeks after he was born, Jacob was diagnosed with Spinal Muscular Atrophy Type 1- a condition once considered a heartbreaking, life-limiting diagnosis.
But today, he is a thriving, joyful one-year-old who adores toy cars and playing outside. His transformation is nothing short of extraordinary, and it’s all thanks to gene therapy.
“Now we’re aiming to get Jacob to walk - something that, just a decade ago, wasn’t even a dream for children with SMA.”
For families like Jacob’s, advanced therapies offer not just hope - but a future filled with possibilities. Jacob now spends more time exploring the world outside hospital walls, and Brooke proudly shares that the treatment is doing what once felt impossible.
TRANSFORMING LIVES
Where your support goes
Your tax-deductible donations and support brings life-changing gene therapy to children with rare neurological conditions. Together, we’re turning diagnosis into possibility.