We are called the Children’s Tumour Foundation because NF is most often diagnosed in childhood, but NF is a lifelong condition, and we are committed to supporting and finding treatments for everyone with NF.
We are continually looking for new ways to best support our community nationwide. Our frontline Support Services Team have developed numerous programs that exist to help members of our community connect with each other and help them on their journey with NF.
National Phone and Online Support
The Children's Tumour Foundation (CTF) has a dedicated frontline Support Services Team to assist all members of the NF Community.
The front-line team consists of Natalie, Ruth and Meredith.
How we can help
- Provide resources for parents, schools or individuals to help improve knowledge and understanding of NF symptoms.
- Connect with other community members through our new program NF Connect.
- Connect people with NF to a range of experienced General Practitioners (GPs), as well as medical and allied health specialists in your local area.
- Provide support and advocacy for people experiencing challenges.
- Offer support and counselling over the phone, email or via Facebook.
- Facilitate the Peer Leader Network to connect people with NF to an experienced community member.
- Arrange monthly online chat sessions to unite groups such as young people, parents and adults with NF across the country.
NF Connect is designed for members of our community to virtually connect with one another and our Support Team to help alleviate some of the stresses, fears and anxieties they may be experiencing. It is an opportunity to check-in, catch up and exchange information with one another from the comfort of your own home.
We will be running these sessions monthly over the next 12 months and they will be split into four key demographic groups:
- Teens (13-18 years)
- Young People (18-30 years)
- Parents and Carers
What to Expect:
- Guest speakers from health professionals (e.g. speech pathologist, psychologist, physiotherapist).
- Insights from Peer Leaders
- Q&A sessions
- Time to check-in, catch up and exchange ideas and information with your peers
interested? click to find out more
Parent and Peer Leader Program
The Peer Leader Network is currently being implemented to connect new NF Families with experienced and trained Peer Leaders.
Peer Leaders are carefully selected community members who either have NF or are parents of children with the condition. These peer leaders undergo a training program and work in conjunction with the Support Services Team to provide phone-based counselling to community members.
If you would like to speak to a Peer Leader, please contact the Support Team.
We provide a dedicated program to support teens and young adults on their NF journey. While this program is still in its infancy, we aim to expand and adapt to the needs of our young people over time and would welcome your input or feedback.
You can start by joining the CTF Youth Group Australia on Facebook. This is a safe, monitored online space for teens and young adults from age 13-25 to connect with each other.
Our online chat sessions are facilitated by one of our Support Coordinators (now on ZOOM!) covering topics like “friendships”, “finding work” and the impacts of NF. Find out more at NF Connect.
Specialised NF Clinics
There are currently four dedicated NF clinics in Australia, one adult-focused and one paediatric clinic in Sydney and in Melbourne respectively. The CTF provides funding to support these clinics.
The Children's Hospital at Westmead
First established in 1991 by Professor Kathryn North, the pre-eminent Australian name in NF care and research, this multi-disciplinary paediatric clinic runs every Wednesday afternoon, seeing over 300 children each year. This clinic supports local services (GP's, paediatricians and geneticists) in the care of children with NF, and reviews children with complex NF.
The CTF assists the clinic by providing funds to employ a Clinical Nurse Specialist who helps families navigate the NF journey and services within the hospital setting.
To access the clinic, you must have a valid referral from your local paediatrician or from the genetics department at your local hospital.
Please address these referrals to the clinic director Dr Manoj Menezes.
NF Learning Disorders Clinic:
Working alongside the NF Clinic within the Children’s Hospital at Westmead, children are seen for developmental and cognitive assessment with the aim to provide intervention strategies to support learning, education and behaviour. With a backlog of over 100 children waiting to be assessed, the CTF has recently secured funding for an additional session from a psychologist to assess an extra child each week that has been referred.
If you are a new patient, you must have a valid referral from your local paediatrician or from the genetics department at your local hospital. Please address these referrals to Dr Natalie Pride.
Royal North Shore Hospital - NF Clinical Services
A multi-disciplinary NF clinic run through the Department of Clinical Genetics, it serves as a hub for care of complex NF patients, thanks to funding from the CTF. In addition to running an adult skin clinic that services NF patients from any location in NSW, they also support more complex paediatric patients from within their local area. The clinic also serves as a training ground for geneticists, dermatologists and other medical and nursing staff.
The NF Skin Clinic was established in response to evidence that the cosmetic impacts of NF are of high importance among affected adults. This procedure clinic works to improve the cosmetic management of NF and sits alongside the general management clinic. It provides world-leading treatment for NF skin issues with the use of laser therapy and topical treatments to reduce tumours, itch and other common skin symptoms that affect general wellbeing. The clinic’s collaboration with the Burns Unit allows for improved facilities and the ability to treat more complex lesions. The clinic also continues to look for improved treatments options and runs both clinical and laboratory research into topical therapies for cutaneous skin lesions.
The CTF contributes significant funding to help reduce waiting times and increase capacity. The CTF has also assisted with funding additional laser equipment, which has proved to be beneficial in the treatment of cutaneous neurofibromas.
The video below shows the ease and effectiveness with which this treatment can be delivered by the team.
To access the clinic you must have a valid referral from your GP. Please ensure all referrals are addressed and sent to: Assoc. Prof. Yemima Berman (Department of Clinical Genetics, Royal North Shore Hospital).
NF Centre for Translational Research:
With the generosity of John Hughes (Life Patron) and the Listorti Family, the CTF has funded this centre that aims to support and provide services for the early adoption of new therapies and screening options for people with all types of NF. Recently, one of their studies resulted in women with NF being able to access free Breast Screening from age 30 years rather than the standard 50 years.
Learn more about this study here.
The Royal Children's Hospital Melbourne
This paediatric multi-disciplinary clinic runs every second Wednesday and allows for same-day appointments for regional and vulnerable families. The CTF funds a Clinic Support Coordinator to ensure families have a more streamlined hospital experience, and they also provide support, information and connections to community services.
The clinic is also involved in research and the CTF has funded Clinical and Research Fellows and administration, along with providing additional sessions from a Developmental Paediatrician.
NF Learning Clinic:
This is a part of the wider multi-disciplinary team who see children for cognitive and learning assessments. The clinic receives funding from the CTF to employ a Barney Research Fellow and provides intervention strategies to support learning, education and behaviour.
To access this clinic you will need a valid referral from your local GP or paediatrician. Please note your local GP can write indefinite referrals. These will be valid for only one specialist within the clinic.
Please address these referrals to Dr. Gabriel Dabscheck and Fax to: 03 9345 5034
The Royal Melbourne Hospital
This adult clinic has been operating four mornings per year since 2018. Links were established between three Melbourne hospitals as the NF paediatric team noted there was a severe lack of adult services available. This clinic aims to maintain monitoring and care to those affected by NF once they leave the safety of the well-supported children’s hospital environment.
Funding has been secured to assist RMH establish clinic practices and procedures and the CTF hopes to assist with creating more hours for this clinic in the future.
You will need a referral from your local GP or specialist. Please address these to Prof. Kate Drummond and fax to: (03) 9342 4234.
The NF clinic at the Children’s Hospital Westmead is a godsend for my family as it ensures we can see all the specialists we need to care for my son, and it’s so wonderful that they work collaboratively. As a regional family who travels at least 5 hours to see specialists, having all of your appointments close together saves time, reduces the number of trips and helps take some pressure off the rest of the family."
Mum of NF Hero Hamish (NF1)
The CTF is working toward creating clinics in other states and territories. At present, the focus is on establishing a sustainable service for the Queensland community and we hope to address the need for more cohesive services in other parts of the country in the years ahead. To access any of these clinics you must have a valid referral from your GP or local paediatrician.
CONTACT A NF CLINIC AN UPDATE ON THE QUEENSLAND CLINIC
Nf Community Events
Due to COVID-19 and the Government restrictions on social gatherings, we regret that many of our events have been cancelled or postponed for the foreseeable future. We are reviewing events we run on a case-by-case basis, taking into consideration not only the needs of NF patients and their families, but also our own staff, other potential event attendees and the broader community’s health.
The Children’s Tumour Foundation camps are an opportunity for individuals and families living with NF to come together in a safe place to build connections, form friendships and enjoy some time away from the stress of scans and doctor’s appointments. It’s an opportunity to find a place where NF does not define you. The CTF has been organising camps since 2003.
Why are camps important?
NF can be an unpredictable and debilitating condition. For some people it can be an isolating journey that can lead to bullying, anxiety and depression. Many children fail to “fit in” or feel normal due to physical differences, learning difficulties and the impact that their tumours may have on their overall health, which in turn affects their overall quality of life.
The camps encourage connection among community members, leading to improved self-esteem and health outcomes, as well as increased knowledge of the condition. They also help adults and children alike overcome feelings of isolation, anxiety and depression.
The CTF aims to keep the NF Community updated with new clinical information, research trials and treatment methods in a range of different ways. We host free information days in different locations throughout the year and invite guest speakers from different medical disciplines to attend.
In March of 2020, we held a Community Information Day in Sydney with five health professionals speaking about NF. We have compiled downloadable summaries of each of these presentations. You can find them in our Resources section.
For details of upcoming community information days, please keep an eye on our website, Facebook pages or subscribe to our newsletter.
Community days are designed to provide busy families with an opportunity to relax, meet others with similar experiences, and engage with the CTF support team in a safe environment where the focus is on having fun. Ideal for those who have not attended a camp before and would like to meet other NF families.
Head to our NF Community Events page to see if there’s a local community day coming up near you.
NF Sippers are informal catch-ups coordinated by NF community members. They provide an opportunity for people to come together in a relaxed environment to share stories, make new friends and to connect with other people who are living with NF.
To find or start a local NF Sippers Club, contact our Support Team.
Database of Health Professionals and GPs
The CTF receives a lot of calls from people seeking details of health specialists with a good knowledge of NF. We are always looking to expand our database and would appreciate any recommendations of doctors or specialists you have found to be helpful.
Please fill in as many fields as you can, but we are happy to follow up on any details you may not have to hand.
Thank you for assisting us with this valuable resource.