The Children's Tumour Foundation

Community Advisory Panel Chair, Rebecca Spry knows first hand the complexities of NF, and need for support services. Hailing from Hobart, Tasmania, Rebecca (Bec), has neurofibromatosis type 1 and has known about her diagnosis all her life.   Bec attended the University of Tasmania and thanks to the UTas Disability Advisor and the support provided for students with disability, Bec graduated with a Bachelor of Commerce, Bachelor of Information Systems in 2004. Bec has a keen interest in disability sport, and competed as an athlete with disability in both swimming and rowing. Learn more about the amazing work of our Community Advisory Panel at bit.ly/CTFCAP

Meet NF Hero Evie, who is conquering her NF! 🤸♀️ Diagnosed with neurofibromatosis type 1 (NF1) at the age of 4, Evie has overcome brain surgery and delayed motor skills development, but nothing stops her from taking on a challenge! Evie is part of a supportive oztag team and just started GymAbility gymnastics, coming 1st in her very first competition! She's run multiple fundraisers and recently attended an NF camp, tackling archery and the high ropes course. "I know that having NF makes me different from my friends, but I know I can do what they can do if I try hard." #conquernf

SHAPING THE FUTURE OF NF! ✨ The Children’s Tumor Foundation (CTF) USA recently hosted their 2024 NF Conference in Brussels, Belgium. Leanne Dib FFIA, CEO, had the chance to attend the conference as she was travelling with her family overseas. A gathering of experts and innovators, The NF Conference is a global event, attracting participants worldwide across a wide range of scientific disciplines from research and clinical backgrounds. The event is a platform for building and advancing basic, translational, and clinical research in NF, and fostering collaborations within the NF community. This was an excellent opportunity for Leanne to represent the CTF Australia, learn more about global NF projects and meet key CTF USA and Europe staff, including Annette Bakker and Dariusz Adamczewski.

** Last Chance to Vote ** Voting closes TODAY for Westfield Local Heroes Lisa and Robert. Each of our incredible finalists are in the running to be awarded a $20,000 grant for the Children's Tumour Foundation! But we need your vote! One email = one vote. Lisa has worked as a paediatric nurse for more than 30 years and brings that knowledge and care to her role as Support Coordinator at the Children's Tumour Foundation (CTF). Vote for Lisa: https://lnkd.in/gFvKCVt4 Robert is a dedicated volunteer at the CTF and an active member of his wider community. He has a gift for connecting with others and uses his time and skills to support our many programs and events throughout the year. Vote for Robert: https://lnkd.in/gsGJ52-h Please vote and share before 5pm! #conquernf #votetoday #nfsupport #westfieldlocalheroes

Together, we're writing the next chapter in NF care in Australia, and working towards: • Increased awareness and education • Greater investments in research • Improving access to services and coordinated care nationally • Ongoing mental health and wellbeing support #conquernf 

How inspiring! This year, there are two incredible NF Heroes competing on the world stage at the Paralympic Games: Nélia Barbosa of France and Thomas Young of Great Britain. Nélia, a canoeist, was diagnosed with NF, which led to the amputation of her leg. But she didn't let that stop her - she embraced a prosthetic limb and continued her passion. Diagnosed with NF as a child, Thomas has defied the odds with his incredible speed and determination, proving nothing can slow him down. Nélia and Thomas are truly NF heroes! #conquernf #paralympics #paris2024 #goforgold

We’re honored to announce that we’ve been selected as a 2024 #RAREis Global Advocate Grant recipient by Amgen's #RAREis program. This recognition underscores our unwavering commitment to the neurofibromatosis (NF) community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this #RAREisGrant, we’re motivated to continue raising awareness and expanding our efforts in connection, research and advocacy for all those living with NF and their loved ones. Learn more here: https://bit.ly/3Z6sfSP

🎉 CONQUER NF IN COLOUR IS BACK! 🎉 Get ready for a day of fun, laughter, and a whole lot of colour! Whether you're a seasoned runner or looking for a new way to engage your teams, Conquer NF in Colour is perfect for all ages, speeds and abilities! 💙💚 Rolling out across Melbourne, Sydney and Brisbane over three big weeks in November and December, you can choose your distance—2km, 4km, or 10km—and dive into a vibrant experience featuring: ✅ Colour explosions 💦 Penguin-themed splash zones 🎵 Live music 🍔 Delicious food trucks 🎮 Interactive games 🎉 A party atmosphere that guarantees endless fun! No one should face a lifetime of uncertainty alone and funds raised will help ensure Australians living with NF are supported at every stage of their journey. Let's come together, get colourful, and make a difference! Early bird sale starts today. Group rates available for corporate teams! Learn more at https://lnkd.in/gQ98hBh5 #ConquerNFinColour #ColourRun #SupportNF #FunForACause #GetInvolved #conquernf #sydney #melbourne #brisbane #teambuilding #teamchallenge #corporatefunrun

Last week, our Head of Support, Ruth Lindsay, attended the Cumberland ClubGRANTS presentation after receiving a grant from Wenty Leagues and DOOLEYS Clubs for our NSW Camp project! In November, over 100 kids and adults will come together for a weekend to connect, grow and discover.   Allowing children and families the chance to attend our camps free of charge can have a hugely positive impact on their wellbeing and is only possible thanks to supporters like these. 🙌

Sending out a huge thank you to our volunteers who helped sell 50-50 charity raffle tickets to a packed stadium at the St George Illawarra Dragons game yesterday and raised $5176 for CTF. Their enthusiasm and passion was beyond amazing and we could not have done it without them!