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Children's Tumour Foundation Australia

Phone: +61 2 9713 6111

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25.01.2022 Today is R U OK Day, so were asking you the question; R U OK? If youre answer is no, lets start a conversation. We know that life with NF can be tough, and its okay to not be okay. That is why we exist; to help you navigate a pathway from fear to hope.... If youre not feeling okay, we encourage you to contact our support team on 02 9713 611 or email [email protected]. #ruok #ruokday #conquernf

25.01.2022 This September, Plus Fitness are getting behind the NF Hero Challenge and asking their members to GET FIT & GIVE BACK to families impacted by Neurofibromatosis (NF). Check out this great video from Plus Fitness 24/7 Nerang talking about their plans! If youre a Plus Fitness member, make sure you download the app, register for this months challenge and train your way throughout the month! From there, you can join the NF Hero Challenge and help us raise much needed funds.... Its not too late to register! Head to www.ctf.org.au/events/nfhc to take on the challenge! #conquernf #nfherochallenge #nfhero

24.01.2022 Kylie Webb has NF2 and has worked alongside ABC Radio National to produce a podcast, called Earshot. Producer Sam Loy tags along with her as she ticks the last few items off her bucket list of sounds she wants to hear before finally succumbing to her hearing loss. Sam Loy is a Melbourne-based podcast producer, writer, editor, and voiceover artist. He produces the independent podcast, Human/Ordinary, and has had stories feature on Strangers Radiotopia and All The Best FBi Radi...o. Listen as he recounts Kylies journey, not shying away from the tough moments that have led to this point, but helping to celebrate her strength and resilience. These are the four final items on her list: Hearing the sound of the waves crashing on the beach Listening to "Amazing Grace" on the Bag Pipes Listening to the organs play at the Cathedral in Bendigo Hearing her niece Sophie call her "Aunty" We are so proud of Kylies efforts to help others understand what it means to live with NF2 and ongoing support of the Childrens Tumour Foundation Australia. She is an exceptional person and a real fighter. Click the link to listen to the podcast: https://bit.ly/35amXtt #podcast #nf2sday #nf2 #conquernf

22.01.2022 #nf2sday Take a look at this video from the "Ask Kate" series developed by Childrens Tumor Foundation in the US. In this video, Kate discusses the genetics of neurofibromatosis type 2 (NF2). #conquernf #nfhero #nf2

21.01.2022 Check out this amazing story that appeared on 9 News Canberra tonight. Thank you to Carey Russell for helping raise awareness by showcasing the hurdles Jess is currently facing and the commitment of the whole family to support her. #nfherochallenge

21.01.2022 Throughout August we reached out to the NF community to understand their experiences in workforce and whether NF has restricted employment opportunities in any way. The purpose of this was for our Support Services Team to prepare a Submission in response to the Employment Issues Paper for The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. We are happy to say that the submission paper is now complete and you can read it here: https:/.../bit.ly/2ExIIbR. We hope that this submission will aid in the understanding of NF and lead to change in workplace practices. #conquernf

21.01.2022 With the recent delivery of the Victorian Budget comes much needed support for families living with disability in the State. In particular, resources for schools and additional funding for autism assessments included. You can read more about the supports provided by the budget here

20.01.2022 Amy ORourkes son William has Neurofibromatosis (NF), a condition that causes benign and malignant tumours to form throughout the central nervous system As a mental health nurse, Amys first instinct has been to fight for greater understanding of the condition and to advocate for him and other families living with NF. Despite being a busy Mum and working full-time for Queensland Health, Amy has taken on a leading role within the CTF.... I use my time to help others understand NF, to fundraise for a cure and to support families of newly diagnosed children in particular. It is a lonely journey, but I hope my positivity helps others to get through the tough times," Amy says. If Amy is successful, the CTF will create a new patient registry to help identify both adults and children who would benefit from clinical and support services, as well as future research initiatives. Voting closes September 14: https://bit.ly/3gonryk #conquernf #westfieldlocalheroes #westfieldhelensvale #helensvale

19.01.2022 Last Wednesday we hosted the first of our NF Wellbeing Webinars, talking about The Importance of Wills and Estate Planning. This webinar is now available on the resources page of our website: https://bit.ly/2Zf13BN Whether you tuned in on the day or want to check it out later, the message from our guest speakers, Ellen-Eleni Pacelli Solicitor (fellow NF Mum) and Dr Malcolm Stoddart of Owen Hodge Lawyers (OHL) is that planning for you or your childs future is something will u...ltimately make life easier in the event of someone passing. As many in our community know, life (and particularly NF) is unpredictable, but there is an easy way to get yourself organised. We are pleased to announce that during the month of September, OHL are asking for their usual consult fee of $50 be donated directly to the Childrens Tumour Foundation Australia instead. No matter where you are in the country, you will be able to have a one-on-one chat with someone who understands what it means to live with the anxiety of NF, while also being an experienced solicitor. For anyone who wishes to organise a consultation: Call 02 9570 7844 to book an appointment with Ellen Quote the words NF HERO or CHILDRENS TUMOUR FOUNDATION Make a $50 donation through this page: https://bit.ly/2R2tbTU PLUS if you decide to move forward with a will or estate plan, 20% of the fee will also be donated to the CTF during September!!! We are so grateful for the support of OHL, Ellen and Malcolm to help support our community and the organisation in this way. #conquernf

19.01.2022 You know you have a great kid with a big heart when he chooses to shave his hair alongside Mum because he wants to be brave like all the NF kids...he is already brave. Kyson is 5 years old and was diagnosed with NF1 at just 6 months of age. Mum Sally, has already raised over $1000 and completed her challenge to give hope and inspire others to continue their efforts too! Kyson chose to shave his head to be like mummy...and secretly, they now have a competition to see whos hai...r will grow back faster!! We are almost at the half way point and almost half way to our fundraising goal of $100,000! How amazing is that!! Funds raised help support families like Sallys, who know exactly how important it is to have access to those services. Please continue to give, share and talk about NF. Every dollar raised means so much to small charities like ours. There is still time to register and make a donation. Head to: www.ctf.org.au/events/nfhc #nfherochallenge #nfhero #conquernf

19.01.2022 We hear so many stories of parents feeling frustrated and defeated by a system that is not designed to be easy, particularly for a condition as diverse as NF. We see the injustice of it and feel that much of our role as a support service is to reassure people that they do not need to fight alone. We want to ensure that everyone who has NF can live their life to the full and access the funding and services that they have every right to apply for. Here is a story of one such f...amily. Kyson is 5 years old and has a number of behavioural problems that have been a bit of a challenge to manage without regular appointments with a psychologist, behavioural specialist, dietician, and a speech therapist. Accessing government support through NDIS has been an absolute minefield to navigate, but after reaching out to the Childrens Tumour Foundation Australia, this process became so much simpler and quicker. Mum Sally said, "Ruth has been an absolute god send! Without her support, guidance and knowledge we would not have been accepted for NDIS. This would have meant waiting two precious years to see most specialists. I cannot thank her enough for everything she has done. You can tell she loves her job and truly cares about her clients". You can read Kysons Story here: https://bit.ly/35kZZA6

18.01.2022 A monthly donation = year-round impact. Are you with us? With a regular donation, you’ll help better the odds for children and adults with life-threatening tumours, by helping to fund ground-breaking trials and tests, life-changing support programs and enabling more opportunities to build connections. Head to www.ctf.org.au/donations to set up a regular giving program today.... Together we can #conquernf

18.01.2022 Our team of The University of Melbourne volunteer students are working hard alongside our support team to build a suite of new resources for parents and teachers to help alleviate some of the challenges faced by our NF Heroes at school. Now we need your help! Wed love for you to pass on the survey link below to any teachers (primary or high school) you think would be able to provide us with good ideas and feedback on their experiences in teaching a child with NF. ... It will not take long - about 5-10 minutes - and all of their responses are greatly appreciated. Please share this link with your school or teacher, with all responses required by Mon 21 Sep. https://www.surveymonkey.com/r/LFHVBQB #conquernf

17.01.2022 We recently caught up with Dr Geoff McCowage from The Childrens Hospital at Westmead to get an update on the TiNT MEK Inhibitor Trial following the announcement in June of government funding. The first ever to be invested into NF research! This news has meant that the trial can now be extended to include multiple childrens hospital across all states in Australia and New Zealand! This is amazing news! They are in the final phases of getting all the details sorted before they... open the trial up for recruitment, but you can hear it directly from Geoff by watching this video. To stay up to date with all the latest news and research, make sure you sign up to our newsletter at www.ctf.org.au #conquernf #nfhero #neurofibromatosis

17.01.2022 Teachers in Victoria have had to get creative this year for their annual talent show to move forward as planned. Instead of on stage performances, the talent has moved online to video. Which is great news for NF Hero Cash, whose Dad also happens to be a Video Editor! Cashs talent is being a NF1 Expert! He has our vote! What do you think? ... If you have been getting creative at home during COVID, we would love to hear about it! Video, writing, drawing or singing! How does your NF Hero like to express themselves? Contact us at [email protected] #conquernf #nfhero

17.01.2022 When our Ambassadors get together with our NF Heroes, good things happen - including this great little video exchange between Josh Langley Author and NF Hero Maddy. Maddy spent some time interviewing Josh last week (video to be released soon!), but at the end they recorded a quick call to action to get involved with the NF Hero Challenge! LOVE! LOVE! LOVE! ... Head to www.ctf.org.au/events/nfhc to register or make a donation! Thanks guys!!! #conquernf #nfherochallenge #nfhero

16.01.2022 SALE SALE SALE Grab yourself a bunch of bargains before midnight tonight including: 2 for 1 deal on NEW car stickers 25% off merchandise, including capes, capes and tees... Head to our store today! www.ctf.org.au/store #conquernf #blackfridaydeals

16.01.2022 Ellen has NF2 and had just wrapped her head around the fact that losing her hearing was a real possibility. But after starting on the drug Avastin, that soon changed. After her very first infusion, Ellen noticed a massive change in her hearing. "The first couple of days after the first infusion, I noticed that my hearing felt unexplainably different. On the third day post first infusion, I had gone into work and noticed that the environment felt too loud and everything seemed... to echo. I had to turn my hearing aid down. The day after this, I had forgotten to put my hearing aids in! I noticed I was able to communicate much better at work, home and socially, almost as well as I remembered my hearing to be before I started losing it in my right ear. From this point, I completely stopped wearing my hearing aids and called my audiologist to get a hearing test done to confirm that my hearing had actually improved." Amazingly, Ellens hearing in her right ear had gone from a moderate-severe loss to a mild loss as a result of the drug! Ellen has kindly decided to share her journey with Avastin. The process of being approved for the drug and the amazing story that followed. Wed love for you to take a read! https://bit.ly/2YRkOPB #conquernf #nfhero #nf2 #nf2sday

15.01.2022 Meet Mario. Mario first got involved with the CTF about five years ago after a business colleague told him that a support organisation existed for families impacted by NF. Marios son was diagnosed with NF at only a few months of age, due to the presence of caf au lait spots. Like so many others, Mario had never heard of NF. There was nowhere to learn more about the condition as this was 1979, and the internet was not "a thing". Mario was able to get some information from th...e US, but this did not provide him with much hope for the future. There were no support organisations nor any information available in Australia. At five years of age, Marios son has brain surgery to remove a pituitary tumour, and fortunately has had no recurrences to date. He hoped that his younger son missed out, but recent investigations reveal that two traits, reading and writing difficulties, and early onset osteoporosis, indicates that he also may have the disease. Since discovering the CTF, Mario has organised many fundraising events in Victoria to help raise awareness and support the children and families battling NF. Mario says that he decided to help because he knows how frightening it is for families to deal with the unknown of NF. Fundraising helps to create resources, fund clinics, support research, and collaborate with similar organisations across the globe. Mario hopes that this will not only helps the children with NF, but also the parents who have to deal with the realities of NF day in and day out. "I am able to bring my skills in event management, to organise and run things like Cupids and the NF Hero Walk. I have the time and the opportunity now to give back where I can." Happy Fathers Day Mario and all of the other wonderful father figures supporting their NF Heroes the best way they know how. #conquernf #fathersday

15.01.2022 Adulthood brings with it a new set of health challenges for people with NF. The move from the routine, structured environment of home, school and paediatric healthcare can feel quite isolating at times. Whilst many adults may feel good and feel in control of their health, it is important that medical checks are conducted at least annually even if you do not have any symptoms. Check out the NF for Adults section of our website to learn more about:... Common Health Implications for Adults with NF1, NF2 or Schwannomatosis Family Planning Options Where to get help for your NF Head to www.ctf.org.au/nf-for-adults for more information #ConquerNF

15.01.2022 We rise by lifting others..kindness is catching #conquernf

14.01.2022 There are three types of NF and whilst all three conditions are progressive and cause tumours to form on the cells coating nerves (nerve sheath), they each come with their own set of common symptoms. Having one type of NF does not mean someone has or can develop another. It is extremely rare that someone would have the changes in two genes for this to occur. Signs and symptoms vary with each individual case, so surveillance, management and treatment recommendations should be ...discussed with the appropriate specialists. Check out this great video by Health Sketch that is a simple way of explaining NF1 in particular. Find out more by visiting our website: www.ctf.org.au #conquernf

14.01.2022 Are you a teenager or young adult with NF? You’ve probably reached the point where talking to your parents about the ins and outs of your personal life is off-limits. BUT it is important to keep them in the know about changes in your body that are NF related. The specific things you will need to think about as you head through high school and your teenage years will differ depending on whether you have NF1 or NF2. ... If you experience any of the following changes, start by letting your parents know or get in touch with your doctor. To find out more, head to www.ctf.org.au/nf-for-teens #conquernf

14.01.2022 Yesterday Ruth and Meredith met with Michael Foulkes, Group General Manager of Cabra-Vale Diggers to thank the club for their recent donation. The gift was given through the Fairfield ClubGRANTS program, and will enable us to upgrade our existing resources and ensure our Health Kits are packed with new and relevant info. These kits contain information about NF, as well as sections for you to keep track of all of your health information and history, upcoming medical appointmen...ts, scans and reports. The kit also contains general information on NF and NF Specialists and services in your state. Whether you have a newly diagnosed child, a teen transitioning into adult care or an adult looking for a better way to keep track of your health information, we can tailor a kit for you. Contact our support team on 02 9713 6111 or email us at [email protected] to speak to one of our team today. #conquernf

13.01.2022 We would like to wish all the Dads out there a very happy Fathers Day! "A good father is one of the most unsung, unpraised, unnoticed, and yet one of the most valuable assets in our society." - Billy Graham. Dont forget to give your dad a hug, or virtual hug, today!... #conquernf

12.01.2022 NO JOKES. This is really the last chance to vote for our Westfield Local Heroes, Zoe, Donna and Amy! VOTING CLOSES AT 5PM TONIGHT (AEST). Its FREE... It takes less than 10 seconds to do It could help raise $10,000 (per nominee) So thats a potential $30,000!!!! Money raised will be directed into a new patient registry to help identify both adults and children who could benefit from clinical and support services, as well as future research initiatives, PLUS it could also mean our first ever WA Camp! Click the link to vote: https://bit.ly/32oXGtP One email address = One Vote. #westfieldlocalheroes #conquernf

11.01.2022 Did you know that body image is one of the top three issues of concern for young people aged 15 to 19 years of age in Australia? Love Your Body Week encourages young Australians to learn to celebrate their bodies by challenging everyone to think about what makes their bodies great, and encouraging a positive body image to shift away from what we look like to what makes our bodies amazing and unique. The below words were shared by NF Hero Heather, who is known to many in the c...ommunity for her message of learning to love the skin youre in. "In todays world we are raised in a society that tells us how to fix everything we dont like about ourselves. It tells us we shouldnt have stretch marks, acne, freckles or birthmarks. That scars need special oils to fade them. We are told we have either too many muscles or that we are not strong enough. The list goes on and on... The only way to love your body for everything it is, imperfections and all is to fully embrace what you were born with and what extra stories you have gained along the way. These stories may come in the form of scars from having surgeries, may come from having acne as a kid growing up. They could be stretch marks from gaining lots of weight or loosing lots of weight. Our bodies tell a story of who we are and what we have been through. Love your body for all it is after all its the only one youve got Share with us what you love about YOU! #conquernf #bodypositive Butterfly Foundation

11.01.2022 We wanted to share a heart-felt post from one of our NF Mums, Keeping Up With Karisha who has taken on not one, but three challenges this month in support of her son River and every other NF Hero out there. She will be: Getting a Tattoo to honour River Giving up Smoking... Facing her Fear of Birds She talks about not wanting NF to be the thing that defines River or what makes him different from his peers, but on the flip side she still wants to do everything in her power to raise awareness, find a cure and "fix her baby". If you have joined the challenge - we encourage you to use it as an opportunity to not just raise money, but raise awareness of the challenges you or your child face every day. It is these stories that inspire people to share, like and engage with the issue. Conquering NF is more than just finding a cure. The NF journey from diagnosis through to treatment is challenging, and most of what families will experience is unknown. Many people come to the CTF at breaking point, seeking help to solve a specific problem or to feel connected to the outside world. Their sense of isolation and invisibility has only been compounded by COVID. The role of the Support Services Team is to be a guide and friend; adapting as the situation requires it. But most importantly they understand NF in a way that even close friends and family may not. Ensuring these frontline services are supported now and into the future is critical. If you would like to support the campaign and, you can make a donation directly: https://bit.ly/35t4SXM #conquernf #nfherochallenge #nfhero

11.01.2022 On behalf of the Childrens Tumour Foundation Board of Directors and staff we would like to thank Rachel Skelton for her contribution to our community over the past 4 years. She has been instrumental in the success of our premier fundraising event - Cupids Undie Run - Australia and played a leading role in our community fundraising. Rachel will be leaving us this week and she has our best wishes for a successful future ahead. We will all miss her deep knowledge and understanding of NF and the impact it has on families and the direct support community. Good luck Rachel and keep in touch.

10.01.2022 NF Hero Emme The birth of Emme was long awaited and celebrated by the family including her two older brothers, who were thrilled with the addition of their new baby sister. However nine weeks later, Mum Zoes blissful joy of dreaming of lifetime of happiness with her first daughter turned to heart wrenching pain when six small marks that looked like bruises appeared on Emmes body.... Emme was soon hospitalised for minor respiratory problems, and when Zoe noticed another mark, she decided to take the opportunity to ask the doctors. The next thing I knew the room was filled with doctors and students and a woman who was taking pictures of the marks. Without even talking to the family first, the registrar began telling the students that baby Emme likely had a condition called Neurofibromatosis, Type 1 (NF). A DNA test soon confirmed the diagnosis. At age two, an MRI showed multiple lesions including one on the brain stem. The lesion quickly turned into an inoperable tumour infiltrating through the part of her brain responsible for her heart rate, eating and swallowing. Emme underwent 14 months of rigorous chemotherapy which the family was told had a 30 per cent chance of shrinking it. The brain stem tumour continues to make its presence known causing Emme to choke through the day and night and her speech to deteriorate. It will start to grow again. They can stabilise in early adulthood, but the chances of Emme getting there are not likely." Whilst continually caring for Emme, Zoe has also dedicated much of her time to volunteering for the Childrens Tumour Foundation. Through her volunteer work, Zoe has been a strong and empathetic advocate for families needing specialised support at the Queensland Childrens Hospital. We share this story in honour of children everywhere living with cancer as part of Childhood Cancer Awareness Month. Zoes strength is also one of many reasons she has been shortlisted as one of Chermsides Westfield Local Heroes. Simply by voting (Its Free and takes 20sec), you can help us win $10,000 towards a NF patient registry in Australia! Help us recognise all that Zoe does, as well as her little NF Hero, Emme by voting for her today: https://bit.ly/3jbMh68 #conquernf #nfhero #westfieldlocalheroes #westfieldchermside #chermside

10.01.2022 LAST CHANCE TO VOTE!! Voting for the Westfield Local Heroes campaign closes TOMORROW at 5pm! So now is your last chance to get those votes in. We are proud to have three members of the CTF community nominated in their respective local areas; Zoe Rehbein, Donna Roberts and Amy ORourke!... This community and recognition grants program has the potential to generate up to $30,000 ($10,000 per candidate) for the CTF and families living with NF. It costs nothing to vote, but could mean the world for those living with NF, with funds to be dedicated to specific projects that will benefit families in those locations, as well as the broader NF community. You can find our more and cast your vote by clicking through to the local Westfield page located on our website: https://bit.ly/2QmOuiE One Email = One Vote! But you can only vote once! So if you have 3 different emails, be sure to use one for each person! And dont forget to share with your friends and family to boost our chances of moving these projects forward! SHARE. SHARE. SHARE!!! #conquernf

10.01.2022 Today is International Day of Charity! The United Nations invites all to celebrate the day by contributing to charity efforts in any way they can. Remember you can donate to Cancer Council at any time: www.ctf.org.au/donate You can also sign up to our latest campaign the NF Hero Challenge and help raise vital funds to support individuals and families impacted by Neurofibromatosis: www.ctf.org.au/events/nfhc... And to all who donate and volunteer throughout the year: THANK YOU! #conquernf #internationdayofcharity

09.01.2022 Have you ever felt like no matter how hard you worked at school, you still struggled? It could have been with learning or simply sitting still, but it was something you felt you could not control. It is amazing the impact that one person can have on a person's life, simply by approaching their learning differently or encouraging when everyone else has given up trying. A teacher who got you; who stood in your corner and ultimately changed your life. Someone who saw your worth..., when you could not see it yourself. "He saw something in me that I didn't even see in myself. And from that moment, I learnt that there is a difference between being the best IN the world and being the best FOR the world". These stories are important. They remind us that everyone has something to offer, something of value - all you need to do it find it in yourself. Because you are not a problem, you might just be a drummer. Watch this video and be inspired. #conquernf

09.01.2022 Ambassador Flick Egginton- Australian Survivor is taking on the NF Hero Challenge this September! She has committed to doing 83 squats every single day. That will total 2,500 by the end of the month. Why is this significant? Because NF affects 1 in 2,500 people in Australia. Not only will Felicity be fundraising for NF, she will also be raising awareness. Are you up for the challenge? Register for FREE and discover whats within your power to #conquernf!... www.ctf.org.au/events/nfhc #nfhc #nfherochallenge #fundraise

09.01.2022 NF Hero Zahara Zahara is 12 and in her first year of high school. She is the 2nd oldest of 5 sisters. She is known for her beautiful smile her and kindness towards others. Zahara was diagnosed when she was a toddler with NF1. She is the only person in our family to have NF1. It was hard to take in and still is sometimes when finding out all the information about NF1 as I had no idea what it was. ... Zahara has cafe au lait spots (we call her beauty spots) all over her body and a 16mm glioma in her brain, which she has had for a few years that shrunk from 19mm. We are waiting on recent MRI results for this. She has had ongoing appointments, tests and treatments her whole life. Zahara also has difficulties learning at school, bu she continues to try her hardest despite this. Zahara hosted a fundraiser called Movie Night M8 DAY at our family home and she managed to raise about $2000. This September we will be doing another fundraiser for the NF HERO CHALLENGE called TEAM ZAHARA. Our challenge for this month is fitness and healthy eating. We will meet at Sorrento Beach and walk to Watermans Bay and back to Sorrento in Perth,WA. Wearing yellow, green and blue. We would like to welcome all families to join us on the 27th of September at 9am. To support Zahara and her family, donate to their fundraising page at https://bit.ly/3gL38Ly or join them by registering for the NF Hero Challenge at www.ctf.org.au/events/nfhc #conquernf #nfhero #nfherochallenge

08.01.2022 Just in case you missed it back in August, we have completely revamped (and renamed) our newsletter, NF Quarterly. Read about everything from: The latest research happening out of the US and Australia Updates on new programs and opportunities to connect ... Interviews and stories from NF community members Upcoming events, challenges and so much more! Click the link to read the first edition and make sure you SUBSCRIBE to our e-newsletter by filling out your details on the bottom of any page on our website. https://bit.ly/2FuOWsY #conquernf

08.01.2022 ONE MONTH TIL CHRISTMAS! It will be here before you can blink, so why not get ahead of the game on the gift giving by adding a bauble to our virtual Christmas tree in support of someone you love. For the first time ever, you are now able to donate as a gift, while also helping to fund life-changing NF research. Your bauble will sit proudly on the tree as a shining reminder of how important hope and love is at Christmas time!... Click the link to check out the tree and make a tax deductible donation : https://www.ctf.org.au/campaign/donate/5/christmas-appeal Together we can #conquernf

07.01.2022 Keen to get your school involved in NF Awareness month this year? This May, we want schools and pre-schools across Australia to go blue and green in support of those living with NF and it's so easy to do! Head to www.ctf.org.au/go-blue-and-green... Download our example outreach email Adapt to suit your personal situation and story Send to your child's teacher or principal The most important thing is to get on their radar early to allow time for planning. All they need to do is go online and register and we will help take care of the rest!!!! Sound good? Our goal this May is to make NF part of the national conversation - that includes our schools and preschools. What can you do to help? #conquernf #goblueandgreen

07.01.2022 Local Member for the Ginninderra electorate, Tara Cheyne MLA has been a long-time supporter of the Childrens Tumour Foundation Australia having connected with many families in the Canberra region over the years. "I first became aware of Neurofibromatosis in an episode of You Cant Ask That on the ABC. Just a few weeks later, I was doing a mobile office at a local shopping centre stall and Carey Russell approached me to have a chat. She explained NF to me in more detail in...cluding her own experience with it. The NF Hero March was coming up and by the end of the conversation, shed asked if I would be willing to be an Ambassador for it. Of course I said "yes"! The prevalence of NF and the impact it can have on families combined with just how little is known about it really struck me, and still strikes me to this day. Ive been proud to support in any way I can ever since". Since 2017, Tara has supported, promoted and participated in every Hero March and been a regular donor. She has also spoken about the work of families like Careys and Cams (Elliott) who tirelessly work to raise awareness and funds in our parliament. Connecting with our local and federal members to talk about things that are important to us is the first step in getting NF on their radar and then the national agenda. In the next few weeks we will be releasing a statement that families can use as a guide to initiate conversations with their local members too. When we raise our voices together, it is harder to ignore. Stay tuned. #conquernf #advocacy #nfherochallenge

05.01.2022 Seren was born with beautiful coffee spills on her skin, and when mum Donna asked the doctors and nurses about them, she was told not to worry and that they would fade. Just before Seren turned two, they visited a walk-in GP and was asked how her NF was going. "I think the blank look on my face was all the answer he needed, but it heralded the start of our NF journey. I am so proud of my smiley superstar who wears the peas stuck under her skin with pride and sees her brown ma...rks as something that makes her unique." Since Serens diagnosis, Donna has been working hard to reduce the stigma surrounding NF. She hope to encourage people to not fear NF, but to recognise and understand it. She wants others to celebrate difference and embrace diversity. This is why we nominated Donna to be Westfield Booragoons Local Hero. Not only has she helped educate others about NF, Donna has allowed CTF to extend their footprint to Western Australia. She has fostered positive community attitudes towards inclusion and a general acceptance of people with disabilities and visible differences, and has dramatically improved awareness of NF. If Donna is successful, the CTF will use its grant to run a camp for families impacted by NF - the first to be run in Western Australia. Help Donna make this happen. Vote today at: https://bit.ly/2Qmsepk #conquernf #nfhero #neurofibromatosis #westfieldlocalheroes #westfieldbooragoon #booragoon

05.01.2022 As part of Childhood Cancer Awareness Month, Make September Gold - Childhood Cancer Awareness in the UK have shared the story of our heart-melting NF Hero Emme to an audience of over 72,000 people. Mum Zoe describes Emmes chemo experience like "trying to kill a weed with a flamethrower". With no other option available, they had to watch their beautiful daughter endure trauma and sickness day after day for over a year. Emme suffers multiple deficits from her tumour - chokin...g, gagging, speech difficulties, facial paralysis, poor endurance, headaches, excruciating pain, eating difficulties, and more. She has MRIs every 3 months and spends at least one full day in hospital each week. Her specialist team include her oncologist, neurologist, neurosurgeon, ophthalmologist, paediatrician, brain injury oncology speech therapist, normal speech therapist, occupational therapist, dietician, sleep and respiratory specialist, and psychologist. "Its a road that many would stumble upon, but Emme dances along, full of life and laughter. She falls in pain, then gets up and dances, and she asks me to dance with her. Such is the ferocity and gorgeousness of this girl". Zoe is also one of our Westfield Local Heroes - please take a moment to vote. Its free and could result in a $10,000 towards a new NF patient registry. Cut off is 5pm today! Click Here RIGHT NOW: https://bit.ly/3c2FIAI #conquernf

04.01.2022 We know that finding ways to like, love or be OK in your body can be challenging in the world we live in today, especially for children and young people. Thats why were jumping on board Butterfly Foundations Love Your Body Week. This week is all about coming together to celebrate diversity and build confidence in young people. Throughout the week, well be sharing resources that will help build body confidence and help you learn to love the skin youre in.... #conquernf #LYBWforschools

04.01.2022 Have you been meaning to order a NF Hero Book and Penguin for your child? No better time to shop online than RIGHT NOW! 2 for 1 on these fantastic new car decals and 25% off everything else!! Head to www.ctf.org.au/store to pick yourself up a bargain!... #conquernf

04.01.2022 #didyouknow some people will develop features of NF1, NF2 or Schwannomatosis on only one part of their body? It is, however, much less common and is described as mosaic or segmental NF. Segmental NF and mosaic NF are similar in that there is a mixture of cells with and without the NF gene change. These variants occur after conception leading to a combination of normal and affected cells. Contrary to segmental NF, in mosaic NF the affected area may not be confined to a sp...ecific area of the body, but instead might appear as a less severe case of NF, or may affect various areas throughout the entire body. Mosaicism is quite common in NF2, but can occur in the other types of NF as well. Individuals with mosaic NF have the same genetic implications as those with segmental NF. For people with this diagnosis the chances of passing the condition onto their children is thought to be as low as it is for the general population, but this depends on which area of the body is affected. To find out more, head to the RESOURCES page on our website: https://bit.ly/32gYyR6 #conquernf

04.01.2022 So how does your fundraising help NF Heroes like Jess and her family? A significant proportion of calls and online interactions with our community deal with the human impact and emotional toll of NF. We empower individuals and their families impacted by NF with the knowledge, connections and support needed at every stage of their journey. Online and phone support ... Access to NF Clinical Specialists Development of resources for parents, schools and individuals Virtual Hubs and Learning tools, like webinars and peer leader training Investment into research studies and clinical trials The very nature of NF means that things can change without warning and most of what people will experience is unknown. Knowing there is always someone you can reach out to who understands the challenges presented by NF from infancy through to adulthood is reassuring. Please continue to fundraise, share and talk about NF. Talk about your challenges and why you are getting involved. We are close to reaching $50,000 (half way to our goal) and a day away from being half way through NF Hero Month. This is absolutely INCREDIBLE!!! Lets see if we can get there! To register or donate, head to www.ctf.org.au/events/nfhc #conquernf #nfherochallenge #nfhero

04.01.2022 This image pretty much sums up the day on Sunday with the amazing Richard Reid, our host for the Cupid's Undie Run - Australia Sunday Session! We could not host a real event this year, so we recreated it for the viewers at home! With unbelievable performances by Casey Burgess interviews with NF Heroes and their families, as well as some tasty Cupid's Cocktails created by master mixologist Dedy from O Bar and Dining - it had all the trapping of our iconic event..at home. More... than $115,000 has been raised for the Children's Tumour Foundation so far and some great fun had by participants over the past two weeks with crazy, undie-inspired challenges! Thank you to everyone who registered, donated, supported or shared stories. Our media presence over the past couple of weeks across every state and territory has been truely unbelieveable thanks to the incredible team at The Buzz Group! Millions reached through this epic PR campaign! As always, together we can #conquernf

02.01.2022 Meet NF Hero Will. Will was diagnosed with Neurofibromatosis Type 1 at just six months old. His Mum Amy remembers reading about NF and all of the possible tumours her son could experience over his life span, and the list seemed never ending. ... She hoped that her son would only experience a mild range of symptoms and convinced herself that this will be his reality... Unfortunately, Will was diagnosed with an optic nerve glioma; a tumour in his brain that causes a deterioration in vision. Treatment for optic gliomas is usually chemotherapy. They are not at this stage yet, but he must now have MRIs every six months to monitor its growth. As a mental health nurse, Amys first instinct has been to fight for greater understanding of the condition and to advocate for Will and other families living with NF. Amy spends countless hours coordinating the CTF events and offering online and phone support to NF families to establish and foster a sense of belonging, community and wellbeing. We believe that Amy is a hero to not only Will, but so many other families fighting tumours as their normal. That is why we have nominted Amy to be Westfield Helensvales Local Hero. If Amy is successful, the CTF will create a new patient registry to help identify both adults and children who would benefit from clinical and support services, as well as future research initiatives. Vote for Amy today at: https://bit.ly/3gonryk #conquernf #nfhero #neurofibromatosis #westfieldlocalheroes #westfieldhelensvale #helensvale

01.01.2022 Today is R U OK Day. Lifes challenges can leave people feeling helpless, hopeless, afraid, disconnected and at a genuine risk. A simple way to provide support is by genuinely asking Are you OK?... and being prepared to have regular meaningful conversations to help someone who might be struggling to feel supported when confronted with challenges in life. Below are some simple steps to an R U OK? Conversation GETTING READY TO ASK: Be ready Be prepared Pick your moment HAVING THE CONVERSATION: Ask R U OK? Listen Encourage action Check-in Remember, the conversation doesnt stop with R U OK? #conquernf