NF Australia Limited (NFA) was started 30 years ago as the Neurofibromatosis Association of Australia by a group of families impacted by NF and had the main purpose of providing support amongst the group.
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. It was a difficult time and was proving tough to survive, with efforts further hampered by the closing of the NF Clinic at the Murdoch Children’s Research Institute in Melbourne following the loss of Professor David Danks who was a leader in the field of genetic research, and NF in particular.
Renewed hope arose for the NF Association in 2010 when foundations were created for the organisation that exists today An increasing need and demand to connect with NF families and individuals around Australia saw the organisation shift its focus from being a NSW based association to a national organisation.
The shift brought a change to the organisation’s name, becoming the new NF Australia Limited trading as the Children’s Tumour Foundation of Australia (CTF).
The name change forged a link between the organisation and the Children’s Tumor Foundation in the U.S., both dedicated to raising funds and awareness for neurofibromatosis. It also provided new opportunities to raise awareness and support for NF in Australia.
In 2011 the CTF board of directors realised the need to lift the organisation to a new level, which led to the appointment of the first Children’s Tumour Foundation CEO,
In the quest for CTF to become nationally focused the organisation sought to establish links with families and individuals living in other states who had been impacted by NF however saw limited success. CTF saw an opportunity to expand through Victoria - the second largest state population which housed the Murdoch Children's Research Institute in Melbourne.
CTF began to focus its activities and attention in Melbourne and soon appointed the first Victorian board director.
With the gradual growth and expansion of CTF came an increase in its activities, reach and impact.
CTF launched a full year of awareness and fundraising events in 2013, introducing Cupid’s Undie Run and hosting a Gala Dinner in Sydney in May and Melbourne in October. These ran alongside numerous community events, including the Radio Rentals Treadmill Challenge held during NF Awareness Month at the Sydney Central store.
As CTF continued to connect with an increasing number of Australians living with NF, the need and demand for support became apparent, and the placement of vital support services would become the next major goal of the organisation.
The establishment of an NF Support Network became the next major priority for CTF, and in 2014 the first and integral addition to the service was appointed by way of a National Support Coordinator. Based in Sydney, the National Support Coordinator was a major step in forming a national NF Support Network and became an important support service for adults and parents of children with NF who were both recently diagnosed or had been living with an NF diagnosis but with limited available support and information for years.
The year also saw the first major fundraising outcome for CTF which raised over $1million in 2014.
In May 2015 CTF extended the reach of its National NF Support Network with the appointment of a Victoria/Tasmania Support Coordinator. The new Victoria/Tasmania Support Coordinator is based at the Murdoch Children’s Research Institute in Melbourne and offers a local source of support and information for families and individuals
The year also saw the first ever camps held in Victoria and Queensland in an effort to unify NF communities and offer families and individuals with an outlet for support and friendship.
2016 and beyond
2016 was seen as a year that propelled the organisation forward with many new initiatives.
Firstly CTF got a brand new website which accurately reflected the needs of the community. The Yellow Penguin Army was also born, which gave everyone who did an event with us one team name to deliver a true sense of community. The Cupids Undie Run was the most successful event since its conception in Australia and NF Awareness month in May became the Yellow Penguin Appeal. This gave birth to the Walk of Hope and a national photo competition – Being YOUnique, both of which raised funds and new awareness, plus a Direct Mail campaign which was seen by over 200,000 people.
Combined with the success of the gala dinner, this meant 2016 was the year we could really expand on all of the equipment, research and support services we could fund.