Julia's Story
Julia Szulerowski – Running for NF, Raising Awareness, and Inspiring Others
Marathons, triathlons, cycling events, and fun runs—just reading the list could tire most of us. For Julia Szulerowski, these activities have been more than just a way to stay active—they’ve been her way of coping with NF and turning challenges into action.
Julia was diagnosed with NF at age 20, though symptoms first appeared when she was six, after having a cyst removed. At the time, NF was largely unheard of—even among healthcare professionals—and she assumed it would just mean a few lumps (neurofibromas) and café-au-lait spots. She didn’t realise the condition was progressive and unpredictable, or that any child she had could develop more severe symptoms. Her daughter, Jessica, was later diagnosed with NF and faced her own health challenges, including a brain stem tumour at age 16.
Julia’s journey with fundraising and awareness began in 2000 in the USA, when she ran her first marathon—the Dallas White Rock Marathon—just before her 40th birthday. Running quickly became more than exercise; it was a way to cope with NF, a way to focus her energy, and a way to connect with others living with the condition. Over the next several years, she ran seven marathons across the USA—including San Diego, Chicago, Alaska, Vancouver, Virginia Beach, Nashville, Las Vegas, and Phoenix—raising more than $40,000 for the U.S. Children’s Tumor Foundation and building a network of support along the way.
Life threw Julia many challenges beyond NF. She underwent multiple surgeries, including the removal of a pheochromocytoma from her adrenal glands and a spinal tumour. In 2004, her daughter underwent surgery and radiation for a brain stem tumour, and Julia herself faced a diagnosis of pre-cancerous esophageal cancer. Yet through it all, her determination to “run for NF” never wavered. “Running for me became a way to deal with NF. It helped me to stop crying over it, and helped me to do something,” Julia says. One souvenir from her marathon experience perfectly captures her mindset: “Can’t run from NF…can run for NF!”
Running for me became a way to deal with NF. It helped me to stop crying over it, and helped me to do something."
As one souvenir from Julia’s marathon experience says, “Can’t run from NF…can run for NF!” ...and run she has.
After returning to Australia in 2007, Julia continued her advocacy, running marathons and half-marathons while raising awareness by wearing her NF Endurance singlet. In 2011, she launched the Run Kiama Fun Run for NF, raising $2,800, and later became involved with the Cupid’s Undie Run in Kiama. More recently, Julia has joined Step Up for NF, walking alongside her daughter, Jess, in support of every child diagnosed with NF. While raising funds in a smaller community can be challenging, Julia and Jess proudly wear their Step Up caps and t-shirts—and keep moving forward.
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.
Julia’s story is one of resilience, dedication, and the power of community. NF may be lifelong, but it has also been her motivation to live life fully, inspire others, and keep taking steps—one marathon, one fun run, one fundraiser at a time.
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.
Share this story