Marathons, enticer triathlons, cycling, fun runs – just looking at this list of activities is enough to tire some of us.
For Julia Szulerowski these provided more than just an active lifestyle; they gave her with a way to cope with NF.
Julia was diagnosed with NF at 20 years of age, but she first presented with symptoms at 6 years old after having a cyst removed.
The condition was largely unheard of (even amongst healthcare professionals) at the time, and she assumed her NF diagnosis would just mean a few lumps (neurofibromas) and coffee-coloured spots (café-au-laits).
She didn’t know the condition was progressive and unpredictable, or that any child she had could develop more severe symptoms if passed on.
She gave birth to a little girl, who was also diagnosed with NF.
Julia became involved with the running community in 2000 when she ran her first marathon in the USA – the Dallas White Rock Marathon – a few months before her 40th birthday. She only needed to complete one to prove to herself that she had “the stuff” to run a full marathon, and realised running offered her more than just a way to stay fit.
Running for me became a way to deal with NF. It helped me to stop crying over it, and helped me to do something."
But NF wasn’t the only challenge Julia had to deal with. Shortly after her first marathon Julia underwent surgery to remove an unpronounceable tumour (pheochromocytoma) from her adrenal glands, and again in 2003 to remove a tumour from her spine. In the same year her daughter Jessica (then aged 16) was diagnosed with a brain stem tumour, and the following year Julia was diagnosed with pre-cancerous esophageal cancer.
Life has dealt Julia one challenge after another, but amid all the health scares and battles, none have stopped her from pursuing her main objective: to run for NF.
As one souvenir from Julia’s marathon experience says, “Can’t run from NF…can run for NF!” ...and run she has.
In 2001, Julia participated in the San Diego marathon and raised over $5,000 for the U.S. Children’s Tumor Foundation (CTF) where she met Steve Kendra and Bob Skold from the NF marathon racing team. Together they ran NF marathons in: Chicago (2001); Alaska (2002, 2006); Vancouver (2003); Virginia Beach (2004); Nashville (2005); Las Vegas (2005), and Phoenix (2007). In 2018, Julia and her husband Ralph did the last 320km of the Camino through Spain last year, and next year plan to do the first 500km.
Julia’s efforts have helped raise a total of $40,000 for CTF in the U.S. and also provided her with a strong network of support.
Each event I ever attended gave me a feeling of hope. There is something about being in a room of many people all there to raise money and awareness for NF."
Julia continued her running for NF upon returning to Australia when she connected with CTF Australia. In 2011 Julia launched the Run Kiama Fun Run for NF and raised $2,800.
Julia has been an active member of CTF Australia since that time; participating in various fundraising events in support of the Foundation, including becoming a race director for the Cupid’s Undie Run in Kiama!
NF may be a lifelong condition, but it has also been Julia’s motivation for living her life. In the classic film, Forrest Gump, 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…”.
As a runner and as an adult with NF, it’s safe to say that Julia’s shoes have truly been everywhere. And they’re still moving her forward everyday.