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NFE Athlete Spotlight: Eugenie Steyn

By December 14, 2023February 26th, 2024Fundraiser, NF Endurance, NF1, Story of NF

Diagnosed with NF as a baby, is now an avid runner. Following her most recent race with the NF Endurance team, where she completed the New York City Marathon, she graciously took the time to chat with us about living with NF and the impact running has had on her life.

A woman wearing an orange cape in a race.Children’s Tumor Foundation: To get us started, tell us about your NF journey.

Eugenie: I was diagnosed as a baby. My mom is a doctor and noticed café-au-lait spots as well as a lump on the floor of my mouth.  When I was 5 and 6 years old, I went for surgery to have the lump removed (it grew back the second time). I still have the lump on the floor of my mouth because it grew back again. I also have tumors throughout my body, some visible and some not. I have regular follow-ups and scans for a left optic glioma as well as for neurofibromas in the lumbar and sacral spine. NF presented me with problems of weakness and poor coordination, such that I grew up as a hopelessly poor athlete. While studying for a postgraduate degree, I was unexpectedly diagnosed with a life-threatening, NF-related tumor. I underwent major surgery to have that removed too.

How does NF impact your life now?

Likely NF-related, I live with GAD and ADHD. Staying organized is a challenge but I am continually developing strategies to help me with this. Academic and work-related tasks can take longer for me to complete than the average person. Despite this, I have always persevered. I worked hard to get to where I am now. I have two graduate degrees and am a special education teacher. My NF has made me a better teacher. It has helped me relate better to my students and their families and accept them unconditionally. Instead of only focusing on their challenges/areas for growth, I like to focus on their strengths. My NF is painful and challenging but not debilitating. Do not tell me I cannot or should not do something because I will find a way.

In general, though, for me, giving up is not an option, especially when it is something so important to me. It is just always the way I have gone through life. Not sure where this stubbornness comes from, most likely my dad. Part of it though, may be that growing up, no matter how talented you were you had to take part in sports and athletic days. I usually came last to second last, but I still ran and did my best.A group of people posing for a photo with medals.

My two marathons prior to New York, even though I finished, were tough.  I experienced right-sided weakness and falling over. I was advised by one of my doctors to reconsider running and take up some other activities instead. Of course, this was like a major punch in the gut. Instead of stopping running, I came up with a plan on how to do so safely combination of strength training, a gentle program, and not pushing myself in races.

What does running mean to you? How did you “discover” running?

Growing up, I was always encouraged to take part in running events at school. I took part, but as mentioned above I was not very athletic. I ran on and off after high school too but did not really take it seriously or run consistently. After I had my major surgery and graduated a few months later, I moved to Toronto in September 2011. I did not know many people in Toronto so I joined a running club. From there, I trained for everything from 5Ks to marathons. Running has changed my life. Through running I have developed more passion, determination, perseverance and resilience. I have completed seven full marathons. I have seen that it is possible to achieve dreams which seem impossible. I have met the most amazing people and friends. Running is such a big part of my life, and the marathon especially has been such a personal journey for me, it is a feeling that is hard to explain in words. In addition, running has done wonders for my mental health.

How does the NF Endurance team impact your experience as a runner?

During the Chicago Marathon weekend, my mom pointed out a table at the expo. It turns out it was the CTF/NF Endurance table. This is where I learnt about the amazing work they do. It was as if the missing piece of a puzzle in my life was found. There is an organization that raises money for research and awareness about NF! An organization for a disease that I have lived with my whole life. Until then, I had never met anyone who knows about NF apart from my family, let alone anyone who lives with or has family members with NF! I told myself, one day I will run with this team, and hopefully the NYC Marathon.

Cut to 2023, I connected with them and made it happen. Through them, I have gained more understanding about NF.  Running with the NF Endurance team and the Children’s Tumor Foundation meant and still means everything to me. Meeting and running with people also affected by NF and who truly understand how important running is to us despite our NF and related challenges was so special and I’ve made new friends for life. Like me, these individuals will not let their NF get in the way of their goals. I cannot wait to run A group of people running in a marathon.more races with this incredible team. I am so grateful that I can run, and I am so grateful to everyone who supported me on this journey, whether it was through contributing to my fundraising initiative, through words of wisdom understanding, or support, or even just listening to my story.

What’s a great piece of running advice that you received? 

A wonderful chiropractor in our running community encourages us to “Find the joy in running.” Right now, for me, running is not about speed. It is about enjoying the journey, running with a smile and finishing with a smile. There is so much to be said about soaking in and remembering the atmosphere of a race.

Is there anything else you want to share?

The NYC Marathon: I could not be more happy and more thrilled with how this race went. I had no pain during or after the run. I was able to run comfortably the whole way. I felt good and strong the whole way. I did not lean over or fall to the side once or feel the need to do so. My body cooperated the whole way. I feel like I have defied the odds. The marathon itself was incredible. The atmosphere was magical.  Having my parents at the marathon and meeting up and reconnecting with friends from high school was truly special (one I had not seen in 25 years!). There were a couple of friends from Toronto who surprised me along the route too. The crowds were something else. They were everywhere, but the bridges. Sometimes they were 10 rows deep. They cheered and cheered and put their hands out for high-fives. Sometimes I felt like a celebrity. Celebrating with the NF Endurance team afterward was a mixture of heart-warming and touching emotions. I have so much gratitude and appreciation for Lydia, and my fellow NF team members and their families.

The Wednesday after the marathon, I went to the NF clinic in Toronto for a follow-up appointment. I shared with them what I had done, They were pretty happy for me, to say the least. One of the doctors I spoke to also has NF, so he really understood how important this was to me. He agreed that it was okay for me to continue running marathons, as long as I take the approach I took in New York, strength train, and stop when and if the pain is too much. Stay tuned, I will be back running with NF Endurance in the near future!

Visit to a list of upcoming races with the NF Endurance Team.

A group of people running in a city.