May 17 is Worldwide NF Awareness Day. And the NF community has one million reasons to celebrate!
In less than three years, The Flicker of Hope Foundation has raised and donated just over $1,000,000 to NF research. This research is vital to help find effective treatments for NF, and gives hope to all those living with NF. Thank you to each and every one of our incredible supporters who have contributed much needed funds and helped to raise awareness of NF.
This is $1M research dollars in action ….
Flicker of Hope is the major charity partner for the TiNT trial – a trial of trametinib in children and adolescents with NF1 to treat plexiform neurofibromas and optic pathway gliomas. This research is being conducted by the Murdoch Children’s Research Institute (MCRI). Read more about this trial at https://anzchog.org/the-tint-trial-now-open-in-australia/
ctDNA NF1 project – Research project by The Royal Children’s Hospital to explore the feasibility of early detection of Malignant Peripheral Nerve Sheath Tumours (MPNSTs) using a blood test.
Joint research project between The Royal Children’s Hospital and MCRI for blood pressure monitoring of children and adolescents with NF. This research project was an urgent response during the COVID-19 pandemic to address the inability of NF patients to access medical appointments. Read more here https://www.flickerofhope.org.au/new-flicker-of-hope-research-project/
A Flicker of Hope initiative, collaborating with Tony Hannan at The Florey Institute of Neuroscience and Mental Health to conduct world leading, ground breaking research into autism, cognitive and behavioural issues in people with NF1. The project will utilise cutting edge genetic techniques to explore how these medical issues can be corrected. This research is a vital step in exploring effective treatments for NF1.
A stem cell research project being conducted under the leadership of Professor Jonathan Payne at MCRI. This world leading innovative research is another vital step to developing medications to treat learning and behavioural problems for children with NF1.
We have pledged an initial investment of $150,000 towards this project – our fundraising continues to enable us to finalise our commitment to this project. You can help get us closer to our goal by making a donation at https://www.gofundraise.com.au/beneficiary/flickerofhope
Please continue to walk this path with us as we shine a flicker of hope for all those affected by NF. Thanks a million for your ongoing support!
Follow Flicker of Hope on FB to keep up to date on our NF research projects.