Bare a little to help find a cure for neurofibromatosis

Words Tanaya Joe

Cupid’s Undie Run is an essential fundraising event that donates to The Children’s Tumour Foundation (CTF) of Australia and is the signature fundraiser dedicated to supporting those impacted by neurofibromatosis (NF). It’s about stripping down and being as brave as those living with NF, showing support, raising money and to show the normality of different body types. Due to the pandemic, the run which usually takes places in cities all over Oz, including Kiama, has been given a COVID-safe makeover. The health of the NF community, volunteers and staff are of utmost importance, so instead of thousands meeting in Kiama, you can now form your very own DIY run where you get to pick the location and time between now and February 28.

“We have had to adapt Cupid’s this year to ensure every member of our NF community is safe. Although it’s a shame we can’t all be together in the original capacity we were expecting, we’re asking everyone to get involved and show their support for the many Australians facing the adversities of NF,” says Leanne Dib, Chief Executive Officer, Children’s Tumour Foundation. “Events like Cupid’s Undie Run and ongoing lobbying with the Australian Government has helped fund millions of dollars in research to help those living with NF. We’ve already taken some big steps forward, but there’s more to do.”

NF affects 1 in every 2500 people, and on average, a child is born every three days with NF in Australia. Cupid’s Undie Run brings hope and awareness to those affected with this unpredictable disorder through this fundraising campaign. Currently there is no cure for NF.

A cause close to mother and daughter, Julia and Jessica, from Kiama, who are both living with neurofibromatosis (NF). While facing such uncertainty and adversity both women have discovered individual passions, advocating for NF awareness in their own unique way.

Julia was first diagnosed with NF at the age of 20. Her condition was almost unheard of, and her heart was broken by the news that the condition had been passed on to her daughter, Jessica. Julia searched for a way to cope and she found that in running. She stands by the motto “can’t run from NF… can run for NF”, and run she has.

Completing 320km of the Camino through Spain, participating in countless marathons across the USA and directing the Cupid Undie Run in Kiama since 2011, Julia does not let NF stop her. 

Julia’s daughter Jessica was a natural advocate from a young age. When diagnosed with a brain stem tumour at 16, her classmates applauded as she attended her final radiation therapy, having missed only two days of school during treatment. NF has not been Jessica’s only adversity, diagnosed with Asperger’s and navigating learning disabilities, fitting in has not always been easy. Jessica is a creative spirit now completing her BA in English Literature. She hopes to one day publish her own children’s book.

Supporting each other and others, Julia and Jessica are an inspiring family unit. While their interests may differ, they come together in their drive to advocate for NF. 

And there’s even more reason to get behind this cause this year, as Cupid’s Undie Run turns 10 in 2022. The CTF exists to help bring hope to those facing the unknowns of NF by advocating for more research, better resources and awareness, connections and support needed at every stage of their journey.

Registration is now free, so, assemble your mates, form a team as individual fundraisers and strip down to your smalls – will you hit the main street, beach or give a local sporting match a halftime show like never before?

Sign up at cupidsundierun.com.au and start
fundraising for this great cause.