The Children's Tumour Foundation

We are incredibly grateful for the unwavering support from our partners at Nature over the past three years. Their dedication to delivering a comprehensive brand research study pro bono year-after-year has provided us with invaluable insights that have significantly shaped our marketing and fundraising strategies and ultimately enhanced our impact. Thanks to their expertise as an award-winning strategic consumer insights consultancy and the team at Pureprofile for enabling access to survey participants, we’ve been able to better understand our position in the market and audience, refine our messaging, and increase our outreach effectiveness. The results of their research have empowered us to make informed decisions and drive our mission forward with greater clarity and purpose. Special thanks to Justin Connally and Shawn Christensen for their ongoing support and expertise. We are incredibly grateful! 💙💚 #Gratitude #ThankYou #NatureResearch #Support #BrandResearch #ProBono #MakingADifference #Impact #ctfaustralia #neurofibromatosis #conquernf

Today, our Partnership Manager Fieke Princée had the opportunity to present what we do at the Children’s Tumour Foundation to all staff at Reinsurance Group of America, Incorporated (RGA) in Australia during a "lunch and learn" session in their office in Sydney!  Companies like RGA offer a wonderful platform called "RGA Cares", which allows employees to support charities they feel connected to. Many attendees, both in-person and online, were unfamiliar with Neurofibromatosis (NF), so we were grateful for the opportunity to educate them about the condition and to share how they can support our charity to improve the lives of children and adults living with lifelong, NF tumours. Thank you Reinsurance Group of America, Incorporated and in particular Laurence Fullbrook and Stafford Hamilton (pictured) for supporting the promotion of the Children's Tumour Foundation within your organisation! Want to give your employees an insightful and engaging experience during lunchtime too? Keen to learn more about the Children’s Tumour Foundation and how to get involved? Please don’t hesitate to reach out to our Partnership Manager Fieke Princée or email us at [email protected] #conquernf #lunchandlearn #neurofibromatosis #NF #corporategiving  

Another great awareness article appeared this week in the Daily Mail News talking about Tom's experience of living with NF1. We are continually amazed and grateful to our community for sharing their stories in such a public way; ensuring the next generation are not encumbered by the same challenges we are working hard to address today. If you are a business and interested to learn how you can support, we would love to hear from you. Email us at [email protected] to connect. Read their story below and share. Together we can #conquernf

As we come to the end of another financial year, it is a good opportunity to stop and reflect on what we have been able to achieve over the past 12 months to advance care and awareness of NF with government, industry and healthcare professionals. We simply could not do it without our community, donors, advocates, corporate partners and volunteers. 👏👏 Thank you. Below is a quick snapshot of some of the great work being done to drive change and ensure more people than ever are provided access to critical support services, care and treatments. But there is still much to be done. The Australian first NF Health and Social Impact Assessment released this month, identified six areas of need and six recommendations to help move us forward. We are keen to get stuck in.💪💙💚 There are only days left to get your tax donation in before June 30. Head to https://lnkd.in/eeMfcypn to give a gift and have it matched by Morgans Foundation! Together we can #conquernf #neurofibromatosis #ctfaustralia #taxdonation Morgans Financial Limited

DOUBLE DONATIONS STARTS TODAY! There's still time to make a donation this tax-time. Plus, between now and June 30, you can double your impact! Every donation is being MATCHED by our generous partner, Morgans Foundation, up to the value of $10,000. Your gift can ensure we continue to deliver 👉 Better reach 👉 Better care 👉 Better future for kids, adults and families impacted by all types of NF in Australia. Head to https://lnkd.in/eeMfcypn to make a life-changing gift today. #conquernf #neurofibromatosis #ctfaustralia #taxappeal #nfsupport Morgans Financial Limited

For some children, neurofibromatosis (NF) can impact so many moments of their lives. From the presence of tumours and chronic nerve pain to a never-ending cycle of monitoring, surgeries and specialist appointments, it takes it's toll.   But, it is not just the patient who is affected, parents and siblings are also significantly impacted. Recent research has suggested more than half of caregivers said that the NF diagnosis of one child made it challenging to provide the same level of care to their other children. Additionally, nearly 4 out of 5 caregivers experienced a significant or moderate impact on their mental health.   Everyone facing a complex and uncertain future needs someone to turn to, and our donors make sure this is possible. The Children's Tumour Foundation is the only patient advocacy and support service for children, adults and families impacted by NF in Australia.   Your gift today will make a huge difference to so many families tomorrow. Please donate to https://lnkd.in/eeMfcypn today. #conquernf #taxappeal #neurofibromatosis #nfsupport #ctfaustralia #betterfuture #children #advocacy #research

We are excited to announce that over $130,000 was raised and more than 15,000km tracked in May for Steps Towards a Cure! We are over the moon to have surpassed our goal of $100,000! The contributions made are not just numbers - it will be a way forward for early career scientists and researchers, providing them with the resources they need to advance our understanding and treatment of NF. A huge thank you must go to our sponsors Onsport and TCN - The Card Network for providing amazing prizes throughout May, as well as our double donation partner Essential Energy and an anonymous donor! Together, we're paving a way towards a future where more people are made NF aware and effective treatments for NF are given much greater focus in the years and decades ahead. In behalf of families impacted, including siblings watching their brother or sister live with this condition, we cannot thank you enough for your life-changing contributions. #conquernf #nfresearch #ctfaustralia

It is with great pride and deep sense of purpose that we launch the first Health and Social Impact Assessment for Australians living with neurofibromatosis (NF). In a historic step forward for NF advocacy and care, we officially launched the report at Parliament House on Tuesday 4 June. The Hon. Mark Butler MP (Minister for Health and Aged Care) addressed attendees, together with Shadow Minister for Health, Senator Anne Ruston MP, demonstrating united bi-partisan support and recognition for Australians living with all types of NF. This report is more than an academic endeavour, it is a call to action. The data and insights revealed in the assessment will serve as a catalyst for driving policy reforms, enhancing healthcare delivery, and fostering a more supportive and inclusive environment for those impacted by NF. Within the report, are six clear findings and recommendation and we encourage you to read and share your thoughts and feedback. Download here: www.ctf.org.au/nf_report We are incredibly grateful to Alexion Pharmaceuticals, Inc. for providing grant funding and support for the project and to everyone who contributed to the survey or able to join us at Parliament House, including MPs, healthcare professionals, community members and government advisors. Together we can #conquernf #burdenofdisease #neurofibromatosis #NF #SWN #NF2SWN #NF1 #ctfaustralia

NF is an unpredictable and progressive condition, something Coffs Harbour local, Millie knows all too well. Last May she spoke to News of the Area to share her story, and has connected again this year to provide an update. Millie was diagnosed with NF2 at age 13 after experiencing a number of severe migraine headaches which left her on the couch for hours. She had a multiple MRIs on her brain to see where these headaches were coming from, which revealed vestibular schwannomas on both hearing nerves, as well as multiple smaller tumours spread out down her spine. Millie and her family found themselves on a daunting and unpredictable journey, meeting a multitude of specialists including surgeons, doctors, geneticists, counsellors, and audiologists, with most appointments held at Westmead. The regular trips from Coffs Harbour to Sydney became a norm as they navigated through this challenging period. Millie underwent years of Avastin chemotherapy infusions to slow tumour growth, followed by a surgery to remove a vestibular schwannoma, risking hearing loss and facial paralysis. During the same surgery, she had an Auditory Brainstem Implant (ABI) procedure and later faced Meningitis complications, resulting in temporary deafness. With support from specialists, her ABI was activated early, aiding her fluctuating hearing. Despite challenges, including tinnitus, Millie has adapted to her changing hearing status. In the last year since the first article came out, she has had surgery to remove the vestibular schwannoma from the left side, leaving her completely deaf. She relies on her ABI a lot, and is recovering from facial palsy, but remains optimistic despite everything she has been through. Thank you for sharing your story again. The more opportunities we have to educate the broader public about NF and that it is a lifelong condition, the better. Together we can #conquernf #NF2 #coffsharbour #ctfaustralia #NF2SWN #news #

Earlier this week, we hosted an intimate donor event in collaboration with our partners at Community Bank Darling Square in acknowledgement of NF Awareness Month. These events provide an opportunity for new or existing supporters to learn more about neurofibromatosis from someone with a lived experience while also gaining rare insight from a medical professional working to advance care. Sharing your experience in caring for someone with NF is challenging, but our guest speaker Ann was captivating. She perfectly summed up the significant challenges that families have finding adequate care without the right support and was followed by Associate Professor Helen Young from Westmead Children's Hospital. Thank you to MC Dion Woo and Raymond Tai, Raymond Seeto and the team at Community Bank Darling Square for hosting us at the branch and matching donations made on the night. NF tumours should never be a child's normal, but together we can #conquernf Leanne Dib FFIA Fieke Princée Renee Anschau Lucy Timms Wes Lambert CPA, FGIA, CAE, MAICD David Stretch #communitypartner #nfawarenessmonth #giving