NFE Athlete Spotlight: Kristy Rath

When Kristy Rath joined the Children's Tumor Foundation NF Endurance team in 2009, she was looking for a way to take action after her daughter Jane was diagnosed with neurofibromatosis type 1 as an infant. More than 15 years later, Kristy has completed dozens of races, raised more than $350,000 for NF research, and recently became one of the few runners to complete all six World Marathon Majors. As a physician, advocate, and mom, she has also witnessed firsthand the impact research can have on families living with NF. We caught up with Kristy to talk about running, research, community, and what's next after the Tokyo Marathon.

Children's Tumor Foundation: You've been part of the CTF NF Endurance team for many years and completed dozens of races - including all six World Marathon Majors. What first inspired you to join after Jane's diagnosis, and how did running become such an important part of your advocacy?

Kristy: Jane was only a few months old when she was diagnosed. I joined the NF Endurance team because I felt helpless and wanted to do something constructive. I wasn't a scientist or a researcher or an NF specialist, but I could run. The NF Endurance team gave me a way to contribute to the fight against NF.

Completing the World Marathon Majors is an extraordinary achievement. When you crossed the finish line in Tokyo, what did that moment mean to you as both an athlete and an NF mom?

2026 NFE Tokyo Marathon

RELIEF!! Tokyo was HARD! Honestly, at that moment there was nothing else going through my head except getting a drink of water and a banana. Afterwards, to a certain extent, it meant the closure of a chapter in my life. My daughter started college this year and is now an adult. My completion of the six World Marathon Majors coincided with the end of her childhood and the beginning of a bright new future for her.

Jane has participated in multiple clinical trials and seen firsthand how research can change lives. How has her journey shaped your motivation to keep running and fundraising for the NF community?

When I first became part of the NF community after my daughter was diagnosed, I would hear people say they wanted a cure for NF and I was skeptical. As a physician, I knew that NF was a genetic condition that was built into a person's DNA. I was hopeful that there could be new treatments for various aspects of NF, but I didn't think there would ever be a cure. Eighteen years later, thanks to the tremendous efforts of NF researchers and advocates like CTF, I truly believe a cure for NF could become a reality in my daughter's lifetime.

You've raised hundreds of thousands of dollars for NF research over the years. Is there a moment - during a race, a fundraiser, or along Jane's journey - that reminds you why this work matters so deeply?

I've raised over $350,000 since 2009. The FDA approval of selumetinib in April 2020 was a huge milestone. It reminded me that funding research makes a difference in very tangible ways.

After completing all six World Marathon Majors - a milestone many runners dream of - you're still lacing up your shoes and preparing for the New York City Marathon. What keeps you coming back to the start line year after year?

The sense of community. Kathrine Switzer once said, "If you are losing faith in human nature, go out and watch a marathon" and I feel this sentiment deeply. A marathon includes people of all different abilities and walks of life racing together on the same course with elite runners, giving their all, having worked towards this goal for months and months. But it also includes all the volunteers supporting the runners; volunteers who give up their own time to set up the race course, hand out water and other aid. And it includes all the spectators, cheering for their loved ones but also cheering for perfect strangers. The whole event to me is a celebration of human spirit and is an example of pure joy.

Looking ahead, how do you hope your work - through public health, advocacy, and NF Endurance - will help shape the future for families living with NF?

I hope the funds I have raised through NF Endurance will continue to help support research that can benefit more families living with NF. I hope my advocacy and public health work will make NF more familiar to the public and to health care providers, and will give people living with NF more access to the care they need.

Rapid Fire Fun Facts

Favorite post-run snack? Nuun Strawberry Lemonade flavor!

Song or playlist that powers you through tough miles? I don't listen to music while I run, but I keep a few songs in my head that I know are the perfect cadence for tough miles. This month it is "End of Beginning" by Djo. I also try to have a "to do" list to work through to keep my mind occupied: planning my day, writing a blog post or reviewing materials for one of my classes. While training for Tokyo, I quizzed myself on various epidemiology principles during my long runs!

Early morning run or late-night run? Ideal time: mid-morning after breakfast and reading the news over coffee! Since that rarely happens,

late afternoon after work. I am not an early morning person!

One word your child would use to describe you as a runner? Persistent

If you could run anywhere in the world, where would it be? Echo Bay, the Lake of the Woods, Ontario, Canada where my husband's family lives. The weather is typically sunny and dry, the roads are empty and I'm surrounded by Canadian wilderness. Best of all, I can jump straight into the lake to cool down after my runs.