Louise Skilbeck Cupid's Undie Run Interview


Louise Skilbeck Cupid's Undie Run Interview

Davina Smith, Dan Conn, Andrew Reid, Apollo Jackson, Melissa Wu, Alicia Loxley and Sam Reid

On Sunday 17th February you can celebrate Valentine's Day in style and 'Dare to Bare' for Cupid's Undie Run in your city.

Be a Cupid's VIP and receive a limited edition pair of Calvin Klein Cupid's undies, a Cupid's T-shirt and other goodies. Or be a Self-Styled Cupid and wear your own special Cupid's outfit. There's also prizes up for grabs for our fundraisers and best dressed at each location.

So 'Dare to Bare', 'celebrate being different' and help make a real difference for the kids and their families impacted by NF!

Details on all the fun at: www.cupidsundierun.com.au.

Interview with Louise Skilbeck, Cupid's Undie Run CEO

Question: What is the Cupid's Undie Run?

Louise Skilbeck: Cupid's Undie Run is the largest community fundraising event for the Children's Tumour Foundation of Australia. It is a 1.5km "brief" run, followed by a big party to shine a light on the genetic disorder, Neurofibromatosis (NF). Cupid's is a fun run, that isn't about running, or winning, or even undies...it is about fundraising for a cure. The Cupid's Undie Run event provides the CTF with the opportunity to start a national conversation about Neurofibromatosis, by encouraging our community to dress up or strip down and celebrate "everyone's' differences". People with NF can feel "different" because of external tumours or birth marks and may feel misunderstood or judged by society based on their external appearance. Cupid's promotes the message that, stripped down, we are all the same - we are have our lumps and bumps – we are all human. It doesn't matter what size you are, what colour your hair or skin is, whether you have birth marks or tumours, we are all beautiful just the way we are, and we are all worthy of respect and love. Often participants dress up in a crazy costume, or they do #dare2bare and run in their undies, but either way, we run in solidarity with our NF community knowing that it's OK to be different.


Question: Can you tell us about Neurofibromatosis?

Louise Skilbeck: Neurofibromatosis is a genetic disorder that can cause tumours to form on any of the millions of nerve cells on a persons' body, including their brain and spine. It's painful, unpredictable and for the most part, progressive and currently there is no cure. NF affects approximately 1 in 2500 births, making it more common than Huntington's and Muscular Dystrophy - yet awareness is sadly, lacking. There is no way to predict how NF will affect an individual in their life time, so living with NF is like "living with a ticking time bomb". Tumours can develop at any time and can invade multiple nerves or systems of the body. People with NF have a higher risk of developing cancer, can suffer from blindness, deafness, bone abnormalities, debilitating nerve pain, scoliosis, learning difficulties and in serious cases, it can be fatal. Unfortunately, due to the pain and unpredictable nature of the condition, many can also suffer from mental health issues including depression and anxiety and social isolation and fear of the future.


Question: What's the main message you hope to spread with the Cupid's Undie Run?

Louise Skilbeck: We hope that the Cupid's Undie Run can start a national conversation about Neurofibromatosis (NF) and given it's prevalence, improve awareness so that it becomes more recognised and understood. Some NF sufferers have experienced mistreatment (e.g. being asked not to try on clothes in a shop or denied access to public swimming pools), because others think the condition could be contagious. Through Cupid's we believe that we can unite and make a difference in our mission to conquer NF, while sharing the message that it is "OK" to be different. Our 'celebrate difference' message is important, not just to the Australian NF community, but to every single person, who has ever felt less than perfect because of their appearance. We truly believe that by celebrating our differences and stripping down, that we will encourage people to embrace their bodies and not be defined by their genetic make-up, their weight, scars or what they perceive as "visual imperfections". Every person is uniquely imperfect and that's what makes us human! We offer a safe space to be entirely you and that in itself, is liberating!


The other important message of our campaign is that by encouraging people to get out of their comfort zone, whether it be stripping down and running in undies or wearing a silly costume in public, people can understand and feel first- hand how someone who does have a condition that affects their appearance may feel. People with NF, particularly if they suffer from external tumours or bone abnormalities, can suffer from anxiety from perceived judgement from the community, based solely on their appearance and looking "different". Our society is so focused on outward appearance and a shallow interpretation of "beauty", that is often emphasised by magazines and media, that we have set impossibly high standards, that leaves many feeling inadequate.

People with NF can be marginalised, stared at or ridiculed because they look different. Sadly, the NF community has a higher incidence of clinical depression and suicide rates are alarmingly high. We want people to be more accepting of one another and conditions that they don't understand. We want people to show empathy, and not to be judged every day, because of your appearance. People who participate in Cupid's not only run in solidarity with the NF community, but they are thrown out of their comfort zone and asked to look ridiculous in public, to truly understand HOW it feels and to start a movement to change our obsession with appearance and superficial beauty standards.


Question: How has this run, in the past supported The Children's Tumour Foundation of Australia?

Louise Skilbeck: Cupid's Undie Run is CTF's largest fundraising event. In 2018, it helped CTF raise almost $500,000. Our aim is to surpass that half million dollar mark this year. In the past this money has funded vital medical research into improved treatment options for NF (nearly $900,000 so far) as well as practical support services such as the establishment of NF specialist clinics major hospitals in both in Victoria and NSW. We have also funded world class medical equipment at our NF Skin Clinic at RNS and supported fellowships there and in other hospitals. We also fund social connection opportunities for NF sufferers who otherwise may feel isolated and depressed. These take the form of Family Camps, Family Days, Facebook Groups, Information Seminars and Webinars, as well as information Packs for those recently diagnosed. Our main aim is to establish a multi-disciplinary NF Clinic in each major hospital in Australia, so that sufferers can be seen locally.


Question: Can you tell us about how Neurofibromatosis affects a family?

Louise Skilbeck: Neurofibromatosis affects each person and each family differently. It can be hereditary, and each member can vary greatly in how NF impacts their life. It can also affect any family at any time and occur from a spontaneous genetic mutation. We have seen children lose limbs from NF related tumours, undergo years of chemotherapy, lose their vision and hearing and we have lost beloved members of our community at an early age from a malignant NF related tumour. Many of our young children undergo dozens of surgeries and treatments before their tenth birthday and so may also suffer from learning difficulties due to regular time off school. It is truly unrelenting and cruel and it unpredictable nature naturally can strain family life as they feel they are living with a time bomb.

Rachel Skelton- CTF's National Campaign Manager of Cupid's Undie Run, has a beautiful daughter Bella who is 4 years old and has NF from a spontaneous mutation. Rachel works tirelessly and closely with our NF community. She describes how a diagnosis of NF affected her family. "For me, finding health professionals who are knowledgeable and experienced with NF has been a challenge. My daughter Bella is 4.5 and has tumours compressing her spine. We have to fly from Queensland to the NF clinic at Westmead in Sydney, to see a Neurosurgeon for her tumours. This is an expensive task and one that people with NF from all over Australia have to do, to receive quality care form the clinics that CTF helps sponsor. For most of us, we are told to watch and wait, to monitor tumour growth with regular MRI',s because there are very few effective treatment options available. We hope for clinical trials, we hope tumours are operable and we hope and pray for the word "stable", but it's hard."

"An NF diagnosis is crippling for a parent, because there is so much that is not understood and there is just no way to predict how it will affect your child or when. It has already robbed Bella of so much of her childhood. Bella went in to a check-up appointment with a neurologist, who noticed she had brisk reflexes and sent her for an MRI. One week later we were told she had tumours compressing her spine. She was just 18 months old at the time. Every 6 months Bella has to see a team of specialists to monitor her NF, she sees a pediatrician, a pediatric ophthalmologist ,(to check her eyes for optic gliomas), a neurologist to inspect her for possible new tumours, a neurosurgeon to monitor her spinal tumours and the bright spots that show up on her brain scans (to make sure they don't turn in to tumours). She sees OT and a speech pathologist, because she has mild delays and she sees an ENT and dermatologist.

The appointments feel like they are never ending. We live life as normally as possible, but whenever an MRI is due, the "scanxiety" creeps in, and you start to wonder how much her tumours have grown, if there are any new tumours, when will they try surgery? We saw oncology recently and sat in a room with children going through chemotherapy, only to be told that NF spinal tumours don't respond to this kind of treatment. I didn't know whether to be relieved or terrified. The risks of surgery on Bella's spinal tumours are paralysis or death, yet the risk of doing nothing, is paralysis or death. NF slowly snuffs out your light and your joy and robs you of hope. It lunges you in to the dark recesses of your mind and makes you consider scenarios and thoughts, that no parent should ever have to think about! Discussing quality vs quantity of life scenarios, about your child, is heartbreaking and numbing at the same time.

Bella's best friend is four and has an inoperable tumour in her brain stem. Her family have spent a year receiving chemotherapy, only to leave the treatment with the tumour larger than when they first started. They leave with no course of action to move to, no answers, no hope and have had to sell their house and live in a cycle of hell as their daughter rapidly deteriorates before their eyes. To put quite simply, NF breaks families hearts. It is a permanent black cloud that hangs over your head and it never goes away. You just learn to live with it, until tumours and scans become your normal. You hold on to hope that one day, there will be a treatment or answers and you will no longer have to live in a constant state of anxiety or fear over what your child's future holds. But even then, your "hope" changes over time, and you begin to just take life, day by day and stop planning for the future....


Question: And, how does Cupid's Undie Run support these families?

Louise Skilbeck: Outside of providing a source of fundraising for medical research and support services, Cupid's Undie Run unites families with NF. It provides a platform for families to share their stories, to be proactive in their desire to find a cure for NF and to improve awareness within the general community. Our event is run by volunteers who are or have been impacted by NF. Many of our race directors in 2019 are mothers who have children with NF and Cupid's is their way of making a difference for their child. They get to direct their concern towards something fun and positive and feel that they are making a difference.


Question: Who will be getting involved with Cupid's Undie Run, this year?

Louise Skilbeck: We have thousands of participants across 15 locations running in Cupid's Undie Run in 2019. These people are made up of "thrill-anthropists" who are participating because the event is fun and unique and for a good cause, NF community members, corporate teams who support the CTF and our mission to conquer NF, as well as teams from our national sponsors, such as Acer, the Athlete's Foot and Plus Fitness.

We have Australian celebrities, personalities and athletes who are our ambassadors, that are running on the day, including; Dan Conn, Apollo Jackson, Sam Reid, Mitch Robinson, Davina Smith, Nick Robertson, Mel Wu, Josh Horner and Felicity Egginton.

Cupid's is for anyone and everyone, it is a 1.5 km dance, skip, walk or jump in your local community...and the best part is, kids are welcome and the party afterwards is awesome.


Question: How can we raise awareness and funds for the research of Neurofibromatosis (NF)?

Louise Skilbeck: You can raise awareness and funds for NF research by supporting the Children's Tumour Foundation and registering for our fundraising events, like Cupid's Undie Run. You can share articles on social media, share your fundraising link, and make a real difference. You can donate now to the CTF through Cupid's by following this link: https://cupidsundierun2019.everydayhero.com/au/children-s-tumour-foundation


Interview by Brooke Hunter

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