Cupid's Undie Run | Community organisation

Cupid's Undie Run

Phone: +61 439 091 404

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25.01.2022 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 child's future is something will ultimately 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 Children's 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 CHILDREN'S 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

25.01.2022 With just two weeks to go until the NF Hero Challenge kicks off in September, it’s time to get cracking on your challenge ideas, get registering and get your ma...tes involved too! Do 10k steps a day to represent the 10,000 people in Australia living with NF Complete 2,500 squats, burpees or push ups across the month in recognition of the 1 in 2,500 affected by NF Every 3 days a child is born with NF in Australia - why not give up 3 things you love for 30 days...Netflix, alcohol, meat? Across the weekend, we will share stories of what makes our NF Heroes so courageous and strong, as well as a few special offers, giveaways and fun inspo from our Ambassadors too! Remember, it is FREE to register, there are some WICKED prizes to be won and by taking part, we are showing 2020 (and NF) exactly who’s boss! Did we mention our top fundraiser will walk away with a $2,500 voucher for Harvey Norman?!! Amazing!!!! Register now at www.ctf.org.au/events/nfhc #conquernf #nfherochallenge #nfhc #nfhero

25.01.2022 Hi! My name is Maddy, I live in regional Western Australia and for my whole life, I have been different. Mum and Dad remember our introduction to NF like it was... yesterday. The eye doctor said, have you ever heard of Neurofibromatosis?. He wrote the word down on a piece of paper and followed it with, don’t Google it. My first MRI confirmed that I have an optic glioma (a thick nerve between my eye and brain) which causes my eye problems. The paediatrician gave me a definite diagnosis of Neurofibromatosis Type 1 when I was about 18 months old. No one else in my family has it. So, it was then that my family knew I was different. They taught me that different is awesome and that I am perfect just the way I am- which I think is pretty special and despite having NF I feel really lucky to have such supportive parents. I definitely think us kids with NF are NF Heroes. I think I am brave, and I am always proud of how I handle all of the tests and doctors' appointments. When I was talking to my mum about having NF she said that she doesn't mind NF, because it makes you appreciate what you have and makes you realise how strong you can be in the face of adversity. It has shown our family how kind people can be and how much the people around us care, especially when they send letters and gifts and visit us in hospital. It makes us feel so loved and proud when they donate and participate in the events we run, because they are helping us improve awareness...and for us, that is very important. Support kids like Maddy and help us raise much needed awareness of Neurofibromatosis across Australia by registering for the NF Hero Challenge. Head to www.ctf.org.au/events/nfhc #conquernf #nfhero #nfhc #nfherochallenge

25.01.2022 We are so excited to have CTF Ambassador and our favourite Survivor, Felicity (Flick) Egginton, on board for the NF Hero Challenge! Every day throughout Sept...ember, Felicity will be doing 83 squats to total 2,500 at the end of the month. She has chosen this as her challenge to represent the 1 in 2,500 people affected by NF in Australia. What's within your power to #conquerNF? Register today at www.ctf.org.au/events/nfhc #conquernf #nfhc #nfherochallenge

24.01.2022 NF Hero Libby Libby’s NF2 journey began when she was 4 years old. What should have been a simple optometrist appointment for a lazy eye became a diagnosis of ...NF2 and a brain tumour. When Libby & her mum were flown from Darwin to Sydney in 2015, to receive specialist care at the Children’s Hospital at Westmead, they were met by several specialists & learnt that Libby had not one, but four brain tumours & a genetic disease called NF2. At just 4 years of age, one week after her first MRI, Libby was scheduled to have brain surgery. One of the tumours in her brain was causing her eye to push through the socket. In 2016, specialists discovered that Libby had a new tumour which wasn’t present during her previous MRI. Within eight months, a tumour had grown in her spinal cord. This tumour could be life-threatening & there are no effective medical treatments for NF related spinal tumours. Her family were forced to relocate to Sydney in order to have access to specialist medical care. Every year since her diagnosis, Libby has faced another setback. In 2018, she required spinal surgery to remove an egg sized tumour from the lumbar region of her spine. They were warned about possible paralysis, weakness & other complications, however they had no option other than to proceed and accept the risks as Libby was in immense pain. Remarkably, Libby was the perfect patient & bounced back from her spinal surgery with nothing more than a new scar & a story. In 2020, Libby had her routine MRI & her parents learnt that the tumour near her brainstem was infiltrating more nerves than originally thought. There is now no medical treatment available for her most dangerous& unstable tumour. Devastatingly, Jen & Cam had only just come to terms with the new reality surrounding Libby’s spinal tumour, when they were dealt another blow. Libby developed a tumour on the retina of her left eye. This wouldn’t be a major issue, except she cannot really see out of her right eye after her brain surgery several years ago. So, she has a new tumour on her good eye & after a 5-hour long appointment, specialists could not tell us what it is, or what could happen. We are so tired of constantly being on edge. We know that it is likely that at every appointment we will be told that things are changing or worsening, but there is nothing we can do about it. We are just watching & waiting for bad things to happen. An important part of Libby’s NF journey, that her parents want to start a conversation about, is the impact an NF diagnosis has on siblings. Libby’s younger sister now has a fear of hospitals & of her sister dying. She has now begun seeing a psychologist, but for her parents, they know her fears are justifiable. While there is no cure for NF2, we wouldn’t change Libby for the world.This girl has taught people so much about NF, acceptance and given people a whole new outlook on their own lives. We will continue to fight for a cure, so no other family has to go through what we are. #conquernf #nfhero #nf2sday

23.01.2022 Thank you legends!!! Now just keep your fingers and toes crossed for us - winners to be announced 27th October #votenow #conquernf #westfieldlocalheroes ...#neurofibromatosis #nfhero #community Children's Tumour Foundation Australia Keep it Real at Inspire Radio David Roberts Kieran Longbottom

23.01.2022 This year hundreds of every day Australian’s are stepping up to be a hero and #conquerNF. Jai Whitbread from the Gold Coast Titans NRL team has decided to unde...rtake a fitness challenge, where he will do one push up for every dollar he raises in the month of September! You can register for the NF HERO CHALLENGE today! IT’S FREE IT’S FUN IT’S FOR A GOOD CAUSE Every dollar raised makes a hero sized difference for those living with NF! Register today at: www.ctf.org.au/events/nfhc

22.01.2022 Today we share a story of a courageous man who has struggled to feel normal or connected to a world that continually misunderstands him and his condition. Brad ...was diagnosed with NF at 4 years of age and is now 61. Brad has faced a lifetime of stares and whispers, having developed lumps on his face, arms and body during his teenage years which have only continued to grow in number and size. Brad was one of the original members of the NFAA and is now a team leader at Cerebral Palsy Alliance in St Ives. He enjoys his role and also helps out at the local church. He has had his photo displayed in various photo exhibitions around the world, including Great Britain and has appeared on the ABC Show You Can’t Ask That to talk about facial differences. He is not afraid to be a voice for change. He continues to support the CTF through fundraising and as an advocate for all who feel disconnected and alone. He has joined the NF Hero Challenge to once again face his fears because he believes that NF should not hold you back in life, but instead, drive you forward. Brad tackles the challenges life throws at him head on and wins, because "we are all winners and we are all champions. We are Heroes". His faith is what continually moves him forward, knowing that some days will be good and some will require a little more care. He is grateful to be able to surround himself with people who accept him for who he is and recognise his beautiful soul. #conquernf #nfherochallenge #nfhero

22.01.2022 This is the story of a fighter. This is the story of Spencer. Spencer was diagnosed with Neurofibromatosis at just 12 weeks old due to a spontaneous mutation. A...t 3, Spencer was diagnosed with Neuroblastoma, a children's cancer, that required immediate treatment. Like many other NF Heroes, the hospital became Spencer's second home. During this time, they discovered that the large Plexiform Neurofibromas located at the base of Spencer's neck had grown and was causing physical deformities and potential bone issues. In 2017, at age 9, Spencer began the battle of debulking or removing the largest of his tumours. With a long and arduous surgery, the family was hoping for a huge success. Sadly, Spencer had an unforeseen complication that resulted in his head destabilising and falling. His spine pierced into the base of his brain with all the newly stretched skin on the back of his head completely dying, leaving an open and severely infected wound across the whole back of his head. Spencer began the lengthy journey of traction, multiple surgeries, a spinal fusion, new skin grafts, and on top of that, learning to walk again. Spencer won the hearts of his village with his inspirational view of life. In 2018, surgeons broke the news to Spencer and his family that he had another tumour in "tiger country". Placed between his windpipe, jugular and carotid artery, it was growing and impacting these vital vessels. Surgery, again, led to more complications and a long road to recovery. Fast forwarding to the present, Spencer is back on track and better than ever, determined to find a cure to the condition that has changed Spencer's future forever. Spencer still has over 20 tumours throughout his body. The future may be uncertain, but one thing that is not is Spencer's spirit and outlook. He classes himself as lucky and, without a doubt, a true inspiration. #conquernf #nfhero #gogoldforkids

20.01.2022 A before + after of a 28 year old woman who underwent one of my electrodesiccation treatments for #neurofibromatosis. The ‘before’ shot on the left shows the tu...mors she was living with prior to treatment... the ‘after’ on the right is 6 months post-op, with pretty great resolution we were both thrilled with. The number of effective surgeons in the USA who offer this complex solution for #nf1 can be counted on one hand, I am grateful to be recognized by the NF community as one of them. Living with NF? Connect with NF Network Arizona Neurofibromatosis Network - Colorado Neurofibromatosis Northeast Neurofibromatosis Midwest Children's Tumor Foundation for support, information and resources through the journey. For questions + consultations, in-person & virtually: call 800-958-3778 email [email protected]

19.01.2022 Today is the day!! Tune into Inspire Radio around 9.15

17.01.2022 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 community for her message of learning to love the skin you're in. "In today’s world we are raised in a society that tells us how to fix everything we don’t like about ourselves. It tells us we shouldn’t 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 it’s the only one you’ve got Share with us what you love about YOU! #conquernf #bodypositive Butterfly Foundation

16.01.2022 This superstar supporter and mum Enya Brown have been growing their hair forever.to their actual bums with the only intention to always chop and donate. I am s...o lucky to have stumbled across the path of Enya all those moons ago working in Just Spectacles, and here we are again kicking goals at Specs 241 Rockingham Enya and Annabel not only chose to donate their locks - but to go the extra mile and use the opportunity to fundraise for the Children's Tumour Foundation Australia and the NF Hero Challenge Annabel and Enya have raised over $1700 for the September challenge and is still climbing! You can donate all through the month of September to Annabell at https://www.ctf.org.au/my-fundraising/400/annabelle-brown or better yet - set yourself a challenge! That gives you 30 days to complete a challenge that tests you physically, mentally or emotionally. What you choose to do is up to YOU! Why? Because no two cases of NF are the same, so why should the challenge you take on be any different? Big thanks to Harveys Barbers located at Rockingham Centre and to the Hairdresser of September - Hannah Fielder.Thank you so much Annabel and Enya- we owe you a freddo frog x #conquernf #nfhero #nfhc #nfherochallenge Inspire Radio OnlineBIGFOOTventure Kieran Longbottom Rockingham United FC Woodbridge Cooloongup Chat

16.01.2022 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 wi...ll 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 what's within your power to #conquernf! www.ctf.org.au/events/nfhc #nfhc #nfherochallenge #fundraise

14.01.2022 Good Morning! You may recognise these faces - but let me introduce you. I’m Donna one of the Fremantle Race Directors and this little superstar is Seren who has NF1. Because of this condition - I became a volunteer for the Childrens Tumour Foundation as the Fremantle Race Director, and we look forward to seeing you guys every year. I am committed to improving the quality of mine and other children’s lives. SOOOOO.I have been nominated to win a $10,000 grant for the Child...ren’s Tumour Foundation. I just need your help with a VOTE! Super simple and will take you less than two seconds - not exaggerating. If you were also able to share any posts that would be equally spectacular! When I win - not if - then I will be arranging a camp for these little Hero’s and their families. It will be the FIRST in WA and I cannot even begin to tell you how much this would mean to all the families. To have some fun, to be stress free, to not worry about the next MRI, to not be stared at, to feel accepted and most importantly - to feel included. NF can be very disfiguring and many of those that suffer live in isolation. These camps have such a positive impact on the mental health of entire families, not just the kids. The website link is below - and I would be so very grateful if you were able to vote AND share amongst your networks, work place, familythe postieplease and thank you https://bit.ly/2Qmsepk #westfieldlocalheroes #conquerNF #votenow #conquernf #westfieldlocalheroes #neurofibromatosis #nfhero #community #celebratedifference Children's Tumour Foundation Australia

08.01.2022 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

08.01.2022 This week is National Pain Week, a week dedicated to educating the wider community about chronic pain and the challenges experienced by those living with it to ...help breakdown the stigma associated with it. Pain is a common symptom for people living with all forms of NF at some stage in their lives. Chronic or persistent pain can be difficult to understand, manage and treat. Pain is indivisible but when it occurs has the potential to be all consuming and disabling in some circumstances. If you are experiencing persistent pain alongside a diagnosis of any form of NF you should get in touch with your medical professional as soon as possible for discussion to rule out any underlying or manageable cause. The Pain Toolkit may be useful for those who struggle with pain on an ongoing basis. You can download the Toolkit here: https://bit.ly/3hy4ZEt #conquernf

05.01.2022 https://www.ctf.org.au/page/216/maddys-story We love you Maddy xx

05.01.2022 VOTES AND SHARES NEEDED PLEASE! It’s Monday! A whole new week to share my posts and gain any votes from friends and family that have 2 seconds spare . Think o...f your workplace-a million email addresses and most people have their work and personal accounts to vote with With enough votes, I have a chance of winning $10,000 that will be donated to Children's Tumour Foundation Australia and go towards a camp for kids with Neurofibromatosis, as well as their siblings. The community vote for Westfield Local Heroes runs from 25 August to 14 September. The beauty of this is, it doesn’t matter you are in the world, you can still vote! One Email = One Vote Click here - https://bit.ly/2Qmsepk #votenow #conquernf #westfieldlocalheroes #neurofibromatosis #nfhero #community Western Force Children's Tumour Foundation Australia Specs 241 Inspire Radio Online Woodbridge Cooloongup Chat Rockingham Fish Market

05.01.2022 Please share far and wide to support Team Roberts and WIN this grant for the families of Perth!

03.01.2022 MASSIVE thank you to everyone that took the time to vote - we can finally share that WE WON!!!! Thank you so much for all of your support and kind words - we are very appreciative and cannot wait to start arranging plans for the families

01.01.2022 What does it mean to be a NF Hero? Every person born with NF is a NF Hero. These heroes are forced to battle tumours that can cause significant health issues in...cluding blindness, persistent pain, deafness, bone abnormalities, disfigurement and developmental delays. This September, we have the opportunity to fight alongside our NF Heroes by participating in the NF Hero Challenge. Let's show them that they are not alone, and they have an army behind them. Register for the NF Hero Challenge at www.ctf.org.au/events/nfhc #conquernf