The Minns Labor Government has today announced $100,000 in funding for the Children's Tumour Foundation to support children, adults and their loved ones impacted by neurofibromatosis (NF) tumours across NSW.
Over 13,000 people in Australia live with neurofibromatosis (NF), a group of rare and complex genetic conditions that cause tumours to form on nerves throughout the body.
The additional funding will help the Children's Tumour Foundation to continue supporting families impacted by NF by offering vital education resources, case management, online peer support and in person connection for more than 100 people at an upcoming NSW Family Camp.
Both virtual and in-person supported events provide respite and connection for families impacted by NF, especially for those patients and their families living in regional and remote NSW.
The funding will also help to raise awareness of NF across the state and support the continuation of a Clinical Nurse Consultant position at Sydney Children's Hospital Westmead ensuring the complex multidisciplinary care required to support paediatric patients remains available.
NF can lead to a range of significant health issues such as deafness, blindness, physical differences, bone abnormalities, learning difficulties, epilepsy, chronic pain and cancer.
For more information, visit: Children's Tumour Foundation
Quotes attributable to Minister for Health, Ryan Park:
"The Children's Tumour Foundation is championing public awareness and offering critical support for people living with neurofibromatosis (NF) tumours in NSW.
"This work can have an extremely powerful impact on people living with NF, so I'm delighted to be able to provide the Children's Tumour Foundation with this additional funding that will help the charity to reach more people in NSW.
"Access to the right resources can make a real difference, helping families and patients feel supported, informed and less alone as they navigate complex health conditions.
"It's a pleasure to be able to assist the organisation in continuing its work in providing emotional support and expert advice to improve the health and wellbeing outcomes of people affected by NF across the state."
Quotes attributable to Children's Tumour Foundation of Australia Head of Support Ruth Lindsay:
"The Children's Tumour Foundation is deeply grateful to the Minns Government for providing this vital funding, which enables us to continue supporting every person in NSW impacted by neurofibromatosis (NF). Our upcoming NF Community Camp offers families the rare chance to relax, connect and enjoy meaningful time together away from hospital appointments and the daily stresses of living with a complex health condition.
"Neurofibromatosis might be a hard word to say, but it can be even harder to live with. Through our phone and online support services, and our peer support activities, we help people stay connected, informed and empowered. For those living with a chronic, lifelong condition that affects both physical and mental health, knowing that support is just a phone call or email away can make all the difference."
Quote attributable to a Children's Tumour Foundation NF camp participant:
"Before the camp, I felt very alone in my NF journey with my son. My concern, particularly for him, growing up with both physical and cognitive differences was a large concern for me. With the NF camp, we have had the opportunity to meet other children (and parents) with a similar lived experience who can not only empathise with the situations we face; but also offer advice and resources on how to approach these situations - whether it be medical professionals, educational settings, or in general society."
