Dialog Box

About Us

The Children's Tumour Foundation of Australia (CTF) is the leading charity supporting sufferers of Neurofibromatosis (NF) in Australia. 

A diagnosis of NF presents many challenges, but also barriers in accessing the best care and support from childhood right through to adulthood. In addition to building meaningful community connections and funding promising research, we provide practical support for those impacted and their families at every stage of their journey.

WE BELIEVE THAT TUMOURS SHOULD NEVER BE A PERSON'S NORMAL

The Children's Tumour Foundation of Australia was established in 1985 as the Neurofibromatosis Association of Australia with the purpose of providing support amongst a group of families impacted by NF. Over the next 20 years the organisation remained relatively small and relied on the efforts of a few committed families and a single employee who managed memberships and provided information to those impacted by NF. 

In response to the increasing need and demand to connect and support NF families and individuals around Australia, the organisation was rebranded as the Children's Tumour Foundation in 2010 and has grown to a team that provides national support and presence in three states.

WHAT WE DO

Beyond the need for research, furthering the education of NF within schools, amongst GPs and even government, we raise much needed awareness and funds to help fill critical gaps in hospitals where clinical services for children and adults are in short supply or under-recognised.

Our goal is to improve knowledge and understanding of NF, but access to support services is critical if we are to improve the outlook for individuals and families impacted by the condition. 

SPECIALISED NF CLINICS

The Children's Tumour Foundation's (CTF) long-term goal is to have multi-disciplinary NF Clinics in every major hospital in Australia. 

To date, we’ve supported the establishment of clinics for children and adults in Sydney and Melbourne (Westmead Children’s Hospital, Royal North Shore, Royal Melbourne Children’s and Royal Melbourne Hospital), and we’re currently working on establishing a Brisbane clinic. 

CTF funds support coordinators and specialist clinical nurses who help patients and their families navigate the complex hospital system and provide information on diagnosis and treatment options for the ongoing care and monitoring of NF symptoms.

SUPPORT SERVICES

Along with the physical symptoms, living with NF can take its toll emotionally. Providing opportunities for people to come together socially is important, as being part of a community helps reduce social isolation and allows people to connect and share their stories. 

We run morning teas, community days and family camps, as well as helping to facilitate Facebook group and online chat sessions, along with providing national phone support. 

Events like the NF Hero Challenge and the Cupid’s Undie Run also bring communities together to help celebrate difference and create awareness of the NF journey.

MEDICAL RESEARCH

Our mission at CTF is to conquer NF, and to date we’ve expended over $1m on funding NF-related medical research. At present, CTF’s focus is on three main areas: 

  • Funding advanced Phase 2/3 trials of drug treatments that have been successful overseas;
  • Supporting research into the social and developmental aspects of children with NF and their related issues including Autism, ADHD, Anxiety, Auditory Processing and other Learning and Behavioural issues; 
  • Funding research into new treatments for adults with external skin neurofibromas.

EDUCATIONAL RESOURCES

CTF aims to improve knowledge of NF and treatment options for patients, their families, teachers and the medical community. 

We use seminars, webinars, tool kits and booklets, and we also disseminate information on both local and overseas research around treatment and clinical trials via regular newsletters and on our social media updates.

AWARENESS AND ADVOCACY

CTF is the national voice for the NF Community. We collaborate with hospitals, help our members navigate health systems and their government entitlements, while also providing information on contact details for medical and allied health professionals who have experience treating NF patients. 

We also create opportunities for schools, corporate and community groups to engage and fundraise to help improve the life outcomes of people with this genetic disorder. 

Working with state and federal governments, we advocate for improvements in availability and cost of diagnostic scans, medications and improved treatment options. 

NATIONAL HEALTH SYMPOSIUM

Every 18 months CTF facilitates an NF Conference. It’s a chance to bring together NF Specialists from around the world to help boost collaboration, nurture innovation and increase the likelihood of advancements in the treatment and ongoing care of people with NF.

It is also an opportunity to showcase our world-class doctors and local research advancements.

The next symposium is planned for May 2020.




Register for the NF Hero Challenge here

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