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Kristina Rath: Running For a Cure

Kristina Rath started running marathons at age 40, and in the last 13 years, she has raised more than $250,000 for the Children’s Tumor Foundation (CTF). Kristina is preparing for her 20th marathon for the CTF, an organization dedicated to improving the health and well-being of those with neurofibromatosis (NF). The cause is near to her heart.

“My youngest daughter, Jane, was diagnosed with neurofibromatosis as an infant,” Kristina explains. “I had always been a runner, and when my daughter was born and received this diagnosis, I wanted to do something because, at the time, there was no treatment.”

According to Kristina, NF is an extremely rare genetic condition that causes tumors that impact the brain, spinal cord, and nerves. And while it can be relatively benign, it can also be far more severe.

“Neurofibromatosis is a genetic condition that causes multiple nerve tumors and has no cure. It is considered a rare disease; about one in 3,000 people are diagnosed with this,” says Kristina. “Most people have mild or no symptoms. It’s a condition that causes tumors to grow on nerve tissues and can have some other abnormalities associated with it.

“A majority of these tumors are benign. About 10% are malignant, but the problem is that they can be large and kind of locally invasive, meaning because they are growing on nerves, they follow the nerve along, and so they’re almost ropey type tumors,” Kristina continues. “They can be large and, in most cases, can’t be removed. There is also a big concern of pain with NF; I’m happy to say that my daughter does not experience that, but this condition can be a major concern.”

Kristina, a doctor at her own private OB-GYN practice, says her knowledge as a medical professional has been both a blessing and a terror when facing her daughter’s diagnosis.

“I guess it was somewhat beneficial having a little bit of a medical background. And, of course, having a little knowledge is a dangerous thing because all you can think of are the worst-case scenarios,” says Kristina. “But it’s definitely helped me navigate the system better. Especially being able to get her this treatment for such a rare disease. But when I have things explained to me by doctors, I often say, please just explain it to me like I’m a normal mom without any knowledge. When it’s your kid, your medical training goes out the window. But it has definitely allowed me to better understand the technical aspects.”

While NF is rare and is currently without a cure, Kristina says there has been promising news. In 2016, a MEK inhibitor, selumetinib, entered clinical trials, gaining FDA approval in 2020 to become the first-ever medication approved for treating NF.

“Jane was one of the first children in the world to take the MEK inhibitor selumetinib in a clinical trial in 2016,” Kristina says. “There were only 24 kids they tested it on in the world, and in her case, it was successful. So, she has been on that since that time, and I consider her a pioneer.”

Like many diseases categorized as “rare,” knowledge about NF is hard to come by, and research is sparse. Funding and attention often go to afflictions with a larger number of patients. According to Kristina, though, CTF is one of the few organizations dedicated to helping NF patients and their families.

“I can’t pretend to have had an impact on this particular drug, but I do feel that by supporting research organizations like the Children’s Tumor Foundation, that I’ve helped contribute to the research that needed to happen to go into finding new treatments like the one is she taking.”

Kristina’s support comes in a variety of ways. She serves on the boards of several nonprofits dedicated to treating and searching for a cure, including as a volunteer for CTF’s Leadership Council since its 2015 inception. Additionally, she has served on the medical board of the Childhood Tumour Trust in the United Kingdom since 2019 and joined the board of directors of Neurofibromatosis Northeast in 2023.

Outside of the boardroom, Kristina supports CTF by indulging in one of her favorite pastimes.

“My running is actually my quiet time and my therapy,” she says. “I learned of the Children’s Tumor Foundation…they had this NF Endurance Team who run or cycle or what have you to raise funds for research, and because I was a runner, I knew that was something I could do to help.”

In May, Kristina will head to Cincinnati to run in her 20th marathon for CTF. She has three other marathons planned for 2023.

As for Jane, Kristina says the Daniel Hand High School student is “wonderful and doing great.”

“When it comes to NF, there is always something that needs attention…but we try to take it all with a grain of salt,” Kristina says. “She is great now. She’s a superstar at school, and she tries to live day-to-day without thinking about NF.”

For more information about NF, visit https://NFEmom.blogspot.com, CTF.org, or NFnorteast.org. To donate to Kristina’s 20th marathon fundraising goal, visit Krath4jane.com.