You've probably never heard of this genetic condition.

By JULIA SZULEROWSKI 

If you’re familiar with the classic movie Forrest Gump, you’ll surely remember the scene where Forrest says “My momma always said you can tell a lot about a person by their shoes – where they’re going, where they’ve been.” For me, my shoes have been everywhere, both as a runner and as an Australian living with Neurofibromatosis (NF).

Like many people, you’ve probably never heard of NF and the families it affects. NF is a genetic condition characterised by the growth of benign tumours called neurofibromas. These tumours can grow anywhere in the body where there are nerve cells, including nerves just under the surface of the skin, as well as nerves deeper within the body, spinal cord or brain. The condition affects 1 in 3,000 Australians and can cause a range of life-limiting complications including blindness, deafness and bone deformities. There is currently no cure.

I remember being in hospital when I was six-years old, having had a cyst removed. My doctors didn’t know it at the time because the disease was unheard of back then, but this was my first symptom of NF. When I was later diagnosed at age 20, I thought the results wouldn’t mean much more than a few lumps, referred to as neurofibromas, and coffee-coloured spots on my skin referred to as ‘café-au-laits’. Over time I have learnt that not only is the condition progressive and unpredictable, but that it has also affected my daughter Jessica in a heartbreaking way I never could have imagined.

The methods people use to cope with illness are many and varied, but for me, I chose running. I’d always been reasonably fit, and it became a way for me to deal with the emotional challenges that NF confronts you with. It helped me stop crying over it, and helped me feel that I was doing something.  Jessica, my husband Ralph and I moved to America, and I became involved with a running community there. In 2000, a few months before my 40^th birthday, I ran my first marathon – the Dallas White Rock marathon. It was my test for myself, to see if I could I do it, and I was soon hooked, despite my illness.

Soon after, in 2001, I underwent surgery to remove a tumour from my adrenal glands. In that year, I also participated in the San Diego marathon and the Chicago marathon, raising money for the Children’s Tumour Foundation in the US, an organisation similar to the Australian version which is dedicated to providing vital support services to NF sufferers and funding world-class research to help find a cure.

Two years later, in 2003, I was back in hospital having another tumour removed, this time from my spine. I was also caring for Jessica, who had been diagnosed with a brain stem tumour. In 2004 I was told I had a pre-cancerous oesophageal tumour. I decided at the time I wouldn’t let it keep me from pursuing the running that had already given me so much. Between 2003 and 2007 I ran marathons in Alaska, Vancouver, Virginia Beach, Nashville, Las Vegas and Phoenix and, with my team, managed to raise $40,000 for the Children’s Tumour Foundation. Every single one of these events gave me such a fantastic feeling of hope and support that it lifted the burden of living with NF. There is something amazing about being in a room full of so many people, all of them there is raise money and awareness for your illness.

When I moved back to Australia, I connected with the Children’s Tumour Foundation of Australia and was able to continue what I had started in the US as an active fundraising member. In 2011, I launched the Run Kiama Fun Run for NF, and raised $2,800 for the Foundation. This Sunday I’ll be running again, at Cupid’s Undie Run, our major fundraiser for the year, and am hoping to beat the $1,300 my team raised last year. Events such as this help to raise vital funds for essential research, but also help to put smiles on the faces of people suffering from a serious illness. The event is just getting started in Australia, but involves participants stripping down to complete the 1.5km run in their undies! It is truly heart warming to see so many people, both friends, family and strangers, getting together to raise funds and awareness for the illness that has affected me so much. Hope to see you there!

Julia first presented with symptoms of NF when she was developed a cyst at just 6 years of age, but at that time the condition was unheard of. Now in her fifties, Julia has had tumours removed from her adrenal glands, spine, and oesophagus, while her daughter Jessica (who also has NF) was diagnosed with a brain stem tumour. Amazingly, Julia took up marathon running to help her deal with the impacts of the disease and while she was living in America managed to raise over $40,000 for the American Children’s Tumour Foundation. Now back in Australia Julia is continuing her fundraising efforts for the Australian-based Children’s Tumour Foundation, including participating in Cupid’s Undie Run this weekend.

Inspired by wildly successful events of the same name taking place simultaneously in 27 US cities, Cupid’s Undie Run forms part of the world’s largest organised underwear run, and aims to put the ‘FUN’ in fundraising. As the name suggests, participants run in their undies! The event supports the Children’s Tumour Foundation, which provides vital support services and funds research for Neurofibromatosis (NF) in Australia. Local venues including Bungalow 8 in Sydney, The Caxton Hotel in Brisbane and Watermark, at the Docklands in Melbourne, will each host pre and post-race festivities from noon, where undie runners will be able to celebrate their successful fundraising efforts. Event and registration details for each city are available at www.cupidsundierun.com.au.