How Flicker of Hope Foundation Empowers Neurofibromatosis Research

20 May 2024 | Expected time to read: 3 minutes

Associate Professor Aaron Schindeler

In the world of childhood medicine, where every breakthrough holds the promise of changing little lives, researchers like Associate Professor Aaron Schindeler and Dr Alexandra O’Donohue are at the forefront of a battle against rare diseases like Neurofibromatosis (NF).  

NF is a genetic condition that causes tumours to form on nerve cells throughout the body, affecting more than 10,000 Australians. Typically non-cancerous, these tumours can form internally, externally, big or small, existing on any nerve tissue in the body. As a result, symptoms can vary greatly from case to case, with some children facing loss of hearing, sight or blurred vision, problems with swallowing, speech, balance and eye movements. 

The condition is variable and often unpredictable, even when cases appear within the same family. Some children may have very mild and very few health complications, while others may suffer from severe complications that have serious impacts on daily life.  

Unfortunately, there is currently no cure for Neurofibromatosis, only treatment options to help manage symptoms, but Associate Professor Aaron Schindeler and Dr Alexandra O’Donoghue are on a mission to change this. 

Their dedication to finding a cure for NF1 and NF2 is evident in their tireless efforts in the lab, where they spend their days meticulously crafting gene therapeutics aimed at combating this complex disorder. 

With seed funding from Flicker of Hope Foundation, Associate Professor Schindeler and the team were able to kickstart their research and pave the way for groundbreaking discoveries. This initial support allowed them to conduct the baseline research, which allowed them to apply for and secure a highly competitive $1.5 million grant from the NHMRC, providing the vital resources needed to expand their team and scale up their research efforts. 

The impact of this funding is profound. It allows the team to delve deeper into the complexities of NF, exploring innovative gene editing technologies like CRISPR to target and correct mutations associated with the disease. Their work not only holds promise for NF patients but also has wider implications for gene therapy research across various genetic disorders. 

Beyond the lab, the support from Flicker of Hope Foundation has provided stability and momentum to Associate Professor Schindeler’s research, ensuring that he can continue his vital work in the NF gene therapy space. As he looks to the future, Associate Professor Schindeler is excited about the possibilities that lie ahead, knowing that every breakthrough brings them one step closer to a cure. 

The journey to finding a cure for Neurofibromatosis is filled with challenges, but with organisations like Flicker of Hope Foundation by their side, researchers like Associate Professor Schindeler and Dr O’Donohue are empowered to push the boundaries of what's possible. Together, they are shining a light of hope for the thousands of children and families affected by NF, proving that with determination and support, anything is possible. 

This journey is an incredible example of the power of philanthropy and the way philanthropic funds can lead to large scale funding support, helping achieve both immediate effects and long-term impacts, changing one kid’s life today and future-proofing the health of all kids tomorrow. 

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