On Monday, November 13, in New York City, during the Children’s Tumor Foundation 45th Anniversary National Gala, Kevin Martin will be honored as the 2024 NF Ambassador. This award is bestowed upon an individual with NF to recognize their courage living with the disorder, and their personal efforts to further the Foundation goals of research, public awareness, and patient support. CTF is committed to supporting NF patients throughout their life, at all ages, and the role of the NF Ambassador is evolving to reflect that. We asked Kevin to tell us more about his journey.
How did you first learn about your diagnosis?
I’ve always known about my NF. I was diagnosed at age 2, so there’s never been a specific moment where it clicked for me. I was actually with my brother when he went to our pediatrician. He was getting a strep throat test and I was just tagging along and the doctor noticed my head was a bit bigger than it should have been. She was concerned and sent me for a scan. And that’s how my NF was discovered.
My parents were always so open and honest about what NF was, what it meant to have it. So having NF is all I’ve ever known. Even at such a young age, my parents would answer any questions I had about NF, even the tough ones to tell a child like about surgery or even death.
What’s the most difficult obstacle you’ve faced? How did you overcome it?
My scariest moment of living with NF came last year, when my largest tumor, which stretches from my cheek down to my lung, was growing rapidly and showed signs of turning malignant. A follow up PET MRI only made things scarier for me, as my doctors ordered a biopsy immediately after. The waiting and unknowing was the most scared I’ve ever felt in my life, but once the results came back and showed there was no cause for alarm, a wave of relief came over me like I’ve never felt before.
Why did you get involved with the Children’s Tumor Foundation?
My mother has been involved with CTF ever since I was diagnosed. Over the years she’s had numerous roles on the board, and I would often tag along to board meetings and events. I’m still with CTF because while we have made significant progress in NF research, like the first FDA-approved drug for NF, there is still plenty of work to be done.
Tell us about your involvement with the Junior Board and other CTF programs/events through the years.
Since I was a kid, going to CTF events like Racing4Research was always the highlight of my year. I’ve met so many friends through CTF that are going through the same thing I am, so having a supportive community like that is extremely helpful when going through tough times like surgeries.
The Junior Board is a group of young professionals who want to be more involved with CTF. As the “Children’s” Tumor Foundation, there are plenty of events for children and their parents, but not really in between. The Junior Board, now going into our 5th year, has hosted events such as happy hours, cooking classes, painting classes, and more. One project we’re really excited about is our podcast, which will interview NF patients, their parents, doctors, friends/family, etc. and get their insight on their experiences with NF.
What is your message to others living with NF?
One thing I would say to patients with NF is as scary as it can be, there’s a whole group of people who are in this community who will have your back, who are going through the exact same thing. Meeting people at all these CTF events, I’ve had such a supportive group of friends that I’ve met who know exactly what I’m dealing with. And I wouldn’t trade that for the world. It’s been an amazing experience being involved with CTF. It’s brought so many benefits to my life. As scary as it can be, there’s also a positive side to it.
How did you feel when you found out you were the 2024 NF Ambassador?
I was surprised, but at the same time I was very happy. It’s a real honor to be the NF Ambassador and I’m excited for the upcoming year and what I’m going to be able to do. I’ve always been inspired by the amazing ambassadors of previous years, and to now have my name listed among them is an honor.
