Supporting research into neurofibromatosis, the team from Delta Rent shares its experiences in launching the Flicker of Hope Foundation.
In 2017, Con Petropoulos, founder and managing director of Delta Group, along with his wife Anne, waited for their 16-year-old daughter Zoe to come out of surgery for a rare genetic disorder.
Zoe, who has the genetic disorder neurofibromatosis (NF), had just had a tumour the size of a golf ball removed from her sinus cavity for the second time. It’s a journey the family had travelled before, with no end in sight.
Whenever they asked doctors about what the future might hold for Zoe, the constant reply was “we just don’t know – the research hasn’t been done”.
That evening, Anne turned to Con and said “this is crazy, we could be doing this for the rest of our lives – we need to get some research done into this condition”.
This conversation led Con, Anne and their family to launch the Flicker of Hope Foundation in 2018. Since then, the volunteer-run, not-for-profit organisation has raised, and donated, over $1.6 million to NF medical research projects.
Delta Group is the major sponsor of the Foundation – generously covering all overhead and administrative costs – so that every single dollar donated is directed to research.
“The whole idea of the Flicker of Hope Foundation is to give people with neurofibromatosis a flicker of hope – without research and knowledge, there is just no hope,” Anne said.
Neurofibromatosis causes tumours to grow on nerve endings throughout the body. Zoe, the face of Flicker of Hope Foundation, has neurofibromatosis type 1 (NF1). An estimated 10,000 Australians are affected by NF1, causing tumours known as neurofibromas that can result in chronic pain, blindness and cancer as well as learning difficulties, epilepsy and autism.
NF2 and Schwannamatosis are rarer forms of NF, affecting the central nervous system, impacting eyesight and hearing, with devastating consequences for those living with the condition.
The Foundation has provided funding grants for world leading research being conducted by the Murdoch Children’s Research Institute, The Royal Children’s Hospital, The Children’s Hospital at Westmead, The Peter MacCallum Cancer Centre, The Royal Melbourne Hospital, Walter and Eliza Hall Institute, Sydney Children’s Hospital Foundation, Children’s Medical Research Institute, and the Royal North Shore Hospital in Sydney.
Associate Professor Aaron Schindeler and his team at The Children’s Hospital at Westmead in Sydney are working on an exciting project searching for a cure for NF. Seed funding from Flicker of Hope has enabled this groundbreaking research, offering real hope for the future.
The Foundation relies on the generous support of donors and sponsors to continue to fund ongoing medical research. As a registered ACNC charity, all donations receive a tax receipt.
Major annual fundraising events include the family friendly “Kicking Butt for NF”, with AFL legends showcasing their kicking skills, aiming for a target on a larger-than-life butt! With over 22 legends in action – all generously donating their time – there’s plenty of entertainment and laughs for the crowd.
Long term sponsors return each year to support this most worthy cause, with their donation securing a player to kick for them. AFL royalty Peter Daicos claimed the 2022 crown, helping to raise over $260,000.
A corporate golf day is held at Kingston Heath in Melbourne in November each year – with a host of celebrity golfers joining the teams for an amazing day out at one of Australia’s leading golf courses. If you’re a keen golfer, this is an opportunity not to be missed!
The Flicker of Hope team of ambassadors – Peter Daicos, Josh Daicos, Rodger Corser and Anthony Stevens – provide support throughout the year with fundraising activities. Their presence helps to not only raise funds, but also importantly raise awareness of this little-known condition.
Limited places are now available for the 2023 Kicking Butt and Golf Day event. New sponsors are warmly welcomed personally by Con and Anne. If you’d like to get involved and help bring a flicker of hope please reach out to: info@flickerofhope.org.au
Read more about NF and the vital research Flicker of Hope is funding by visiting the website here.