The NSW Government has announced 100,000 dollars in funding for the Children’s Tumour Foundation to help people across New South Wales affected by neurofibromatosis, a group of rare genetic conditions that cause tumours to grow on nerves throughout the body. More than 13,000 Australians live with NF, and for many, the condition shapes daily life in ways that go well beyond routine medical care.
The charity will use the funding to continue providing education resources, case management, online peer support and in person activities. One of the key events it will help deliver is the upcoming NSW Family Camp, expected to support more than 100 people. For families who often juggle medical appointments, uncertainty and gaps in local services, the camp offers time to recharge and reconnect with others who understand the challenges.
Parents in regional and remote areas frequently report feeling isolated, especially when specialist care is limited. The Foundation’s virtual and in person programs aim to bridge that gap by creating spaces where families can share experiences, seek advice and build a network they can rely on. Many see these services as essential, particularly when dealing with a condition that can involve a wide range of health issues from hearing and vision loss to chronic pain and cancer.
Part of the funding will go toward supporting a Clinical Nurse Consultant position at Sydney Children’s Hospital Westmead. According to the Foundation, specialist care of this kind helps maintain the coordinated, multidisciplinary approach NF often requires. Without dedicated roles, families can struggle to navigate complex systems or understand which treatments and monitoring pathways are most appropriate.
Health Minister Ryan Park said the government’s decision reflects the value of accessible information and emotional support for people living with long-term conditions. He acknowledged the work the Children’s Tumour Foundation already does in raising awareness and offering structured guidance to families, and said the additional funding will help the organisation reach more people across the state.
Ruth Lindsay, Head of Support at the Children’s Tumour Foundation, said the charity is grateful for the funding, emphasising that many families depend on consistent support to manage both the physical and emotional demands of NF. She highlighted the importance of the Community Camp as a rare chance for families to spend time together without the pressure of medical routines.
For many parents, meeting others in similar situations can shift how they see their own journey. One camp participant shared how isolating it felt before finding this community, saying the event helped them connect with families who understand the complexities of raising a child with physical and cognitive differences. They described the experience as a chance to learn from others who have faced similar obstacles, whether in healthcare, school or everyday life.
While the government’s funding provides a boost, advocates continue to point out the need for long-term investment in rare disease support services. NF presents differently from person to person, making reliable access to expertise and guidance crucial. Continued collaboration between government and organisations like the Children’s Tumour Foundation will shape how well families can cope with these challenges in the years ahead.
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