Flicker of Hope – Kicking Butt 2023

Established in 2018, the Flicker of Hope Foundation shines a light on Neurofibromatosis (NF) by raising awareness and funds to support NF medical research. This little-known genetic disorder affects one in 2500 people worldwide, with about 10,000 Australians currently living with the condition. 

Neurofibromatosis type 1 (NF1) is characterised by tumours in parts of the nervous system, such as the brain, spinal cord or nerves that send signals throughout the body. It is caused by a mutation in the NF1 gene, which reduces the amount of the protein neurofibromin, which is a “tumour-suppressor.” Less neurofibromin leads to the dysregulation of some cellular processes, causing certain types of tumours, such as in the optic nerves or peripheral nerves, which causes pain and discomfort, disfigurement, vision loss, and other disabilities. Tumours growing near or around important neural structures like the spinal cord can be difficult to remove safely.   

As well as tumours, 80 per cent of children with NF1 will have moderate to severe cognitive difficulties. About 40 per cent of affected children have ADHD, one-quarter have autism spectrum disorder, and over half experience learning difficulties such as dyslexia. 

Sadly, there is no cure and treatment includes surgical tumour removal or chemotherapy. Moreover, treatments for underlying cognitive problems are limited. 

To help shine a light on NF1, Zoe Petropoulos and her mother, Anne, established The Flicker of Hope Foundation in 2018. Zoe, now 22, was diagnosed with NF1 at the age of four months. She has multiple tumours, including in her brain and spine. Zoe also has dyslexia and coordination problems but considers herself lucky as many others with NF1 struggle with far more severe health conditions and complications. 

Image: Zoe Petropoulos and her mother, Anne.

Through their determination, commitment and fundraising events such as Kicking Butt for NF Research, Flicker of Hope has raised and donated more than $1.6 million to support research into neurofibromatosis. The charity is run by volunteers, with 100% of funds donated directed to research. 

Thanks to Flicker of Hope’s generosity, three research projects have been funded at Murdoch Children’s Research Institute, two led by Associate Professor Jonathan Payne and one by Dr Gabriel Dabscheck. The TiNT Trial is looking into trametinib, a targeted anti-cancer drug that has shown promising early results in treating some NF1 tumours; the second research project aims to understand how NF1 affects brain development and behaviour using stem cell models. Dr Dabscheck's MaGen study aims to develop a screening blood test for aggressive soft tissue tumours in patients with NF1, to lead to earlier diagnoses and better outcomes. 

Thanks to the generosity of supporters and sponsors, Flicker of Hope is giving children and families impacted by NF hope for the future.