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The Hugo Long Sunshine Fund: Research to cure childhood brain cancer

By Brooke and Ollie Long

Brain cancer kills more children in Australia than any other disease.

Hugo’s parents Ollie and Brooke Long lived every parent's worst nightmare when their baby boy Hugo was diagnosed with a fast-growing and highly aggressive tumour.

Hugo was 10 weeks old when he was diagnosed with Atypical Teratoid Rhabdoid Tumour (AT/RT) brain cancer which is only found in children, most under 3 years old. It is a rare, aggressive and malignant disease with no cure. The treatment options available can prolong life on average 12-18 months.

The Long family uprooted their lives from Lennox Head to live between Ronald McDonald House and Queensland Children’s Hospital for Hugo to receive treatment in the hope for a miracle. 

Hugo spent 7 months undergoing high dose chemotherapy in hospital and battled the life-limiting side effects before passing away aged 21 months in April, 2024.

“The Hugo Long Sunshine Fund was established because no child should have to endure what our precious Hugo did in his short life." - Ollie and Brooke

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Survival rates for paediatric brain cancer have not changed in over 30 years.

Friday 27th Feb
Hugo loved living by the beach, loved the waves, the sand and being outside in nature. He was curious, determined and the most beautiful, and cheeky boy. 

"We hoped for a miracle to save Hugo - our hope is now for a future where no family has to rely on a miracle but is supported by targeted life-saving treatments” - Ollie and Brooke.

Treatment options and outcomes for children with brain cancer have not changed in 30 years. The treatment protocols are highly toxic, they fail to cure patients and cause excessive motor and cognitive disability. We need to change these inadequate treatment options for our most vulnerable, our children.

'We need to solve this problem so no child has to endure what Hugo did.”

Friday 27th Feb
We are committed to raise $500,000 to fund a dedicated research team to study treatment options with cutting-edge technologies to find a cure.

Hugo's Sunshine Fund will support researchers whose work is connected to AT/RT and advancing our understanding of this disease.

Hugo was only ever given 10% chance to survive.

Friday 27th Feb

AT/RT is a highly malignant and fast-growing form of brain cancer, accounting for approximately 1-2% of all paediatric brain tumours.

Every dollar raised for Hugo’s Sunshine Fund - in partnership with The Brain Cancer Centre - will go directly to research in AT/RT. We hope this will also advance the understanding for other types of pediatric brain cancers.

Private Ancillary Funds (PAF) can contact info@thebraincancercentre.org.au
to designate funds to The Hugo Long Fellowship Fun

We are thankful for every dollar raised towards this fight! It is a gift for those not able to advocate or help themselves and we are forever grateful for this commitment to them.

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