Rachel Skelton – Race Director Cupid’s Undie Run Gold Coast

Location?

Gold Coast

Day job?

Primary School Teacher

Why have you decided to become a Race Director?

My daughter has Neurofibromatosis from a spontaneous genetic mutation. She is 2.5 and in October we found out that she has a plexiform tumour in her C3 and C4 vertebrae (basically her neck), which places her at risk of paralysis if it continues to compress on her spine.

Since her diagnosis at 6 weeks old we were prepared for the tumours- but what broke me after the diagnosis of her spinal tumour, wasn’t the tumour itself or the required surgery, it was knowing that this will be the first MRI under sedation, the first tumour and the first surgery of many! I research NF in my spare time and hear of the horror stories from limb amputation, malignant peripheral nerve sheath tumours, early puberty and developmental delays and it infuriates me because I feel like not enough is being done by the medical profession world wide to shine a spotlight on NF and fund research in to a cure. This is where the CTF come in- they are literally our only support network. They fund research, they are as passionate about families like mine at finding effective treatments for tumours and they bring NF families together. I want my daughter to have a future free from the stigma of physical deformities and tumours that can cause her a lifetime of pain. NF is an awful disease and I want to be productive and play an active role in fighting against Neurofibromatosis. My way of doing this, because I can’t control or predict my daughter’s condition, is to support the CTF in their fundraising attempts. To jump in and help where I can- to not only raise money, but to increase awareness. To make Neurofibromatosis not just a word that is difficult to pronounce, but a condition that people recognise and understand.

Before Cupid’s, how aware were you of NF?

I became aware of NF when I noticed my daughter developing birth marks all over her body, by 6 weeks old she had approximately 40. This is a marker of a genetic disease. I of course googled and was horrified at what I was confronted with.

I discovered Cupid’s after meeting a representative of the CTF at our first ever appointment at the Westmead NF clinic, where we received a formal diagnosis. Any fundraiser that aims to raise money for the Children’s Tumour Foundation is one that I will support without hesitation (even if that means being seen in public with my undies on)!

Will you be dressing up, or dressing down?

I plan on dressing up super silly, in my tutu and with my BONDS Cupid’s undies on my head!

Are you running as part of a team for Cupid’s Undie Run?

I am running with a bunch of wonderful people who want to support me and my daughter. Our team is Bella’s Army. We have a team on the GC and one in Brisbane that is being organised by Bella’s dad who is in the Australian Army.

 If you could have a superpower, what would it be?

I am a nerd and love MARVEL. I used to think that I would choose super speed or strength, maybe even telekinesis…but now I know I would choose the power to heal.

Which ambassador do you most want to meet and why?

I want to meet Felicity from Survivor because not only is she a compassionate and amazing person with so much strength-she is so passionate about giving back and helping people. She has battled her own health issues and found the strength to go on Survivor and lay her soul bare for the nation. I want Bella to face her fears with that courage and determination one day. Actually, all of the ambassadors are brilliant people and I love Caro and how awesome she is, not just at renovating but in smashing her marathon goals. There are so many strong and powerful women on board and it makes me proud to be race director for the CTF. I wish I could fly all over Australia and participate in every event just to meet every single participant and ambassador, to say thank you. The support of strangers means the world to families like mine x

What is your number one goal for your event?

I want the event to be a success, which means a huge turn out, lots of fun, lots of silly costumes and lots of discussion about Neurofibromatosis. I want to see the local community rally behind this cause and support us in our fight against NF!

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