This will be done in conjunction with the Murdoch Children’s Research Institute. It is our aim, through meaningful research and subsequent treatments, to give all people living with Neurofibromatosis not just a flicker of hope but a much brighter future.
Our aim is to raise $4m to fund state-of-the-art Stem Cell Modelling Research that will be conducted in collaboration with the Murdoch Children’s Research Institute and which we hope will find new treatments for NF1-related brain and nervous system disorders.
The research, which will create brain network models using human stem cells from patients with NF1, will be one of first worldwide to study the effects of NF1 gene mutations on the way the brain develops and functions.
This exciting and novel approach will allow personalised therapies for children with brain-related disorders in NF1, and will improve clinical outcomes in quality of life, academic failure, social isolation and developmental disability that are so common in children with NF1.
Neurofibromatosis is a genetic disorder that most people have never heard of. It is estimated that 1 in 2,500 people have it. It is estimated that approximately 10,000 Australians and 2,500,00 people worldwide are living with this condition.
Approximately 50% of Neurofibromatosis sufferers inherited the disorder from their parents but others show no family history of Neurofibromatosis meaning it has occurred spontaneously at the time of conception. Anyone suffering from Neurofibromatosis has a one-in-two chance of passing the condition onto their own children.
Neurofibromatosis causes tumours to grow on nerve endings throughout the body. It can effect major organs and lead to a variety of serious and debilitating health issues including Cafe au lait Spots, Blindness, Bone Abnormalities, Disfigurement, Chronic Pain, Amputation, Cancer, Epilepsy, Learning Difficulties and Autism.
Our knowledge of this condition is incredibly limited – publicly and scientifically. Our hope and our mission is for that to change.
Together we can raise awareness of Neurofibromatosis and the people living with the condition so they can live long and fulfilling lives with pride and optimism for what tomorrow may hold.
Together we can offer Neurofibromatosis sufferers access to appropriate treatments for the serious and complex issues each individual faces, day in and day out.
Together we can shine a light on Neurofibromatosis so that, through meaningful research, we can brighten the future of anyone suffering from the condition and give them hope that more effective treatments are a reality and that, one day, we may even find a cure.
All funds raised will go directly to the Flicker of Hope Foundation and then used to fund research at the Murdoch Children’s Research Institute. We need the support of everyone – individuals, businesses, community groups or schools – to support our drive for much needed research into new and effective treatments.
The Flicker of Hope Foundation has been inspired by a young Melbourne girl called Zoe who was diagnosed with Neurofibromatosis or ‘NF’ at 4 months of age.
Zoe has grown up and enjoyed life just like any other young girl but always with the shadow of Neurofibromatosis looming over her. Zoe and her family have decided to establish Flicker of Hope so much needed funds can be raised to support researchers in their quest to find positive treatments and to improve the quality of life for Neurofibromatosis sufferers everywhere.
Ultimately, we hope our work will lead to improved management, new treatments and, possibly, a cure. Our funding will support research into Neurofibromatosis at the Murdoch Children’s Research Institute based at the Royal Children’s Hospital in Melbourne, Victoria.