Hope for families impacted by NF

Associate Professor Mimi Berman is focused on supporting reproductive decision making and pregnancy outcomes when NF1 and NF2 are present.

This research project will develop online resource information and strategies to promote available technologies and options, including IVF and pre-implantation genetic diagnosis. Research will also include the risk of tumour progression during pregnancy – providing information to those who may otherwise avoid pregnancy due to concerns about disease progression.

You can provide practical assistance by participating in an anonymous survey – https://rnsapmredcap.nslhd.health.nsw.gov.au/redcap/surveys/?s=MJ37ART7CRYK37EE

Flicker of Hope has committed to raise $300,000 to fund this life changing research.

Call for research funding applications

Flicker of Hope is accepting applications for our next round of funding for NF Medical Research. Applications are invited from all organisations. Please email your research proposal to info@flickerofhope.org.au Proposals should be no more than 400 words in plain language.

Flicker of Hope is currently funding the following projects

Elizabeth’s Legacy – Deciphering the Molecular Mosaic of NF2
A flagship program with The Brain Cancer Centre, led by Dr Jim Whittle and his team of researchers from the Walter & Eliza Hall Institute, bringing together the best and brightest minds to focus on solving the puzzle created by brain and other tumours. Flicker of Hope has committed to raise $500,000 to fund this ground breaking world leading research.
211
500
Researching for an NF cure
Associate Professor Aaron Schindeler is heading up a new research project aiming to achieve a CURE for NF. The project is now underway with a team of researchers from The Children’s Hospital at Westmead, Children’s Medical Research Institute and The Australian National University. This is incredible news for the NF community, shining a flicker of hope for those living with NF.
350
350
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.
500
500
NF2 Registry
Dr Jim Whittle from The Walter and Eliza Hall Institute is establishing a registry of information of Australian patients with NF2 vestibular schwannomas (or acoustic neuromas) and other tumours. This registry will provide a framework to conduct clinical trials and identify new treatments, including evaluating the use of Bevacizumab in Australian patients with acoustic neuromas.
150
150
Stem Cell Research Project
Conducted by the Murdoch Children’s Research Institute. This world leading innovative research is another vital step to developing medications to treat learning and behavioural problems for children with NF1.
150
150
Researching autism, cognitive and behavioural issues in people with NF1
Collaborating with 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.
600
600
Blood Pressure Monitoring
Joint research project between The Royal Children’s Hospital and Murdoch Children’s Research Institute for blood pressure monitoring of children and adolescents with NF.
4
4
ctDNA NF1 project
A project to explore the feasibility of early detection of Malignant Peripheral Nerve Sheath Tumours (MPNSTs) using a blood test. Partnering in this project are The Royal Children’s Hospital, The Royal Melbourne Hospital and Peter MacCallum Cancer Centre.
150
150
Hope for families impacted by NF
Associate Professor Mimi Berman is focused on supporting reproductive decision making and pregnancy outcomes when NF1 and NF2 are present.
300
300
This research project will develop online resource information and strategies to promote available technologies and options, including IVF and pre-implantation genetic diagnosis. Research will also include the risk of tumour progression during pregnancy – providing information to those who may otherwise avoid pregnancy due to concerns about disease progression.
You can provide practical assistance by participating in an anonymous survey – https://rnsapmredcap.nslhd.health.nsw.gov.au/redcap/surveys/?s=MJ37ART7CRYK37EE

Flicker of Hope has committed to raise $300,000 to fund this life changing research.