Speeches

Cupid's Undie Run: raising money for neurofibromatosis

February 14, 2019

You might remember the very special story I shared last year of Libby Elliott and the efforts of her dad Cam Elliott. Libby has neurofibromatosis 2 - a condition she developed spontaneously which has resulted in tumours at the ends of her nerves, including in her brain and spine. 

Cam has raised an extraordinary amount of money for the Children's Tumour Foundation and he's doing it again this weekend.

Can you help out by joining the Cupid's Undie Run - Australia or donating? Cam's page is https://cupidsundierun2019.everydayhero.com/au/EndNF2

Listen or read my speech below.

Could you stay strong when your stomach is in knots? You know what is happening inside her body but pretend it is okay. She tells you of dreams to work in Banff National Park, and to not eat sugar when she is an adult. You help her research what she needs to learn to follow her dream. You tell her it will all be okay at the next MRI, even if you are not a hundred per cent sure. You listen to the doctor and try to listen to it all. Sometimes you get the good bit, when it is better than you thought; sometimes you get the scary bits, when it is worse than you thought.
 
Then there are the decisions: to do or not to do. And what if, as a parent, you both do not agree? What if your decision is not the right one? What if it makes it worse? Can you live with that? Would you allow medication to be tested on your son or your daughter?
 
These are all the thoughts and feelings of Cam Elliott, speaking as the father of Libby Elliott, who I have spoken about in this place before. Libby has neurofibromatosis 2, or NF2—a condition which results in tumours throughout the body. It can be passed through genes or, as in Libby’s case, it can occur spontaneously. Libby has tumours on her spinal cord and at the base of her brain. Libby is eight years old.
 
Without research, families like Libby’s cannot get the answers they need, and without funding the research cannot be done. Cam and Libby, as well as Libby’s sister, Katy, and mum, Jen, are doing everything they can to raise awareness of this condition. Since 2017 Cam himself has raised more than $84,000 for the Children’s Tumour Foundation, going to such feats as carrying 68 kilograms for 10 kilometres and 72 kilograms for six kilometres. I joined him on the latter one last year. He also had his very hairy legs waxed for people’s enjoyment, once he raised a certain amount of money.
 
This Sunday the Cupid’s Undie Run will be held at the Southern Cross Yacht Club. For a registration fee of $70, you will get a pair of very smart looking Calvin Klein undies, an “I’m with Cupid” T-shirt, and a whole heap of fun to participate in the run and raise some money for the Children’s Tumour Foundation. You can wear the undies on the outside of other garments if you are feeling shy.
 
If you are not able to make the run, I encourage everyone in the Canberra community to take a moment to donate. It would be great to get Cam to $90,000 raised for NF research by this weekend. I understand that if he hits a target, he will be getting those legs waxed again. In all seriousness, it will be even greater when one day we have a cure. Put simply, we have got to have the funds to get there.