Saturday, 30 January 2016

I'm with Cupid.

So what's with the red jocks and undies  - Cupid's Undie Run

This Valentine’s Day Sunday February 14th , for our 2nd year, my team and I will be stripping down to my undies and running 1.5kms in the fourth annual Cupid’s Undie Run!

 We are participating in this risque event to fundraise for the Children’s Tumour Foundation (CTF).

The Children’s Tumour Foundation provides support and assistance for kids, adults and their families affected by Neurofibromatosis (NF) a group of genetic disorders that affect more than 2 million people worldwide; this makes NF more prevalent than Cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

The aim of the Cupid’s Undie Run is to raise awareness about NF and important funds for CTF. 100% of funds raised will go to sustaining vital support services for NF sufferers, and to promote world-class research to work towards developments in treatment and finding a cure for NF.

I have written about my experience with NF a few times. I had surgery in February 2014 when the pathology came back unexpectedly as a Malignant peripheral nerve sheath tumour. I went through six weeks radiation therapy because the 7cm neurofibroma in my left thigh had a malignant transformation - known as sarcoma.

NF is a lifelong medical condition that causes mostly benign tumours to grow on nerves. It can affect many organs in the body, including the skin, eyes, bones, and nervous system. Less fortunate children have severe disfigurement and sometimes chronic pain.

I have a 3-4cm neurofibroma in my neck very close to my thyroid/trachea and arteries & veins. It's stable , still the worst part of having NF is not knowing what my future holds.

My biggest fear is whether I'll find more tumours or existing ones will get larger . Of course, I am anxious every day for my little boy, Sam and other family members who are experiencing complications as they get older. Sam's vision is affected by a complication of NF. Otherwise he is thankfully mildly affected.

Participating in my undies or a modest version is a huge deal for me.

I'd love my readers to get behind this cause .

As I prepare to run in my undies, I won't lose sight of why I am really putting myself to this fun and risque challenge. It is for a cause bigger than just m family and I. Being brave enough to bare all is certainly nothing compared to the bravery that those living with the complications of NF have every day. 

Those with NF affected by facial dis-figuration, limb deficiencies and amputations are subject to bullying, stares and even people taking photos of them.

 I'm asking for your support . I can't do this alone , my goal is to raise $ 1000. This money will enable continued research and support for NF patients and their families  #endNF !

Events in Sydney, Melbourne and the Gold Coast , together 39 venues world wide '
Donations are 100% tax deductible.
I appreciate your kind consideration.

P.S.  Making a donation is simple. Click the link above and enter $ amount - any donations large or small will be much appreciated.