Meet Our 2025 NF Ambassador: Leanna Scaglione

On Monday, November 18, in New York City, during the Children's Tumor Foundation annual National Gala, Leanna Scaglione will be honored as the 2025 NF Ambassador. This award is bestowed upon an individual with NF to recognize their courage living with the disorder. 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 Leanna to tell us more about her journey.

How did you first learn you had NF2-related schwannomatosis?

I first learned I had NF2-related schwannomatosis back when I was 16 years old because of a very large tumor in my lower spine. I was training to be a ballerina and I thought I had a dance injury in my right hip. It was this sharp stabbing pain that prevented me from lifting my right leg. When physical therapy didn't help and the pain continued to get worse, a doctor set up an appointment for me to get an MRI of my hip. In the top corner of the scan part of a tumor could be seen. An MRI of my spine was then done, showing just how big this tumor actually was. The tumor took two surgeries to remove and ultimately left me in a wheelchair unable to walk due to nerve damage and loss of sensation. It was during a follow-up MRI appointment that another tumor in my lower spine was discovered. Not believing this to be a coincidence, my neurosurgeon had me get an MRI of my whole spine and my brain, as well as genetic testing for NF2-SWN. From there my life was changed.

How does NF2-SWN impact your life today?

While I try not to let NF2-SWN impact my life too much, there are still things I knowingly adjust to accommodate it. For instance, after my right vestibular schwannoma surgery in January, my balance wasn't the best and stairs became difficult to walk down. I ended up moving to a different apartment building with an elevator, and now avoid stairs to the best of my ability. It's the little changes like being more aware of my body and the pain or discomfort I experience. Or having an alarm clock that also shakes my bed because I'm deaf in my right ear now.

The biggest impact though, would have to be my facial paralysis and managing all of the emotions that come with it. My facial paralysis was a result of my vestibular schwannoma surgery. Waking up after surgery and not feeling the right side of my face move was an emotionally difficult experience. I've since had facial reanimation surgery to help bring movement back, but this journey has been a true test of patience and how to surround yourself with the right support system.

What has your experience with clinical trials and surgery been like, including your most recent procedure?

I feel like with clinical trials, I've had a well rounded experience. My first trial had tolerable side effects and I was able to participate knowing that it was ok if the trial didn't work. My second trial, I couldn't even complete because the side effects were that bad. Then with my third, and most recent trial, this one I needed to work. And it didn't. It was during this trial I knew it was time for me to have my right vestibular schwannoma removed.

As for surgeries, they don't get easier. Each surgery, no matter how big, seems to be more stressful than the next. I've had a total of 7 surgeries and 13 tumors removed. I would say having my right vestibular schwannoma surgery was one of the most stressful. I remember being anxious for the entire week leading up to it. Having my mom there helps, though. She's been there for every single surgery and stays with me for as long as the hospital allows her to.

What does running and the NF Endurance team mean to your life?

Running started as a hobby for myself during the pandemic. It was a way for me to get outside and enjoy myself. When I started racing, I found a real passion for it. Each race is an accomplishment that reminds me of how strong I am and what I'm capable of despite everything.

The NF Endurance team is like family to me. The team was where I began my involvement with CTF. I was running the 2022 NYC Half Marathon, and up ahead I saw a runner wearing a blue shirt with "End NF" written on the back. I started crying. At the time, I didn't know they were running with NF Endurance. I thought it was a coincidence. I knew there were others like me living with NF, but it was the first time I experienced seeing it so candidly out in public. When I found out NF Endurance was an official charity team, I made sure to sign up to race with them for the 2023 NYC Half Marathon. It was during the first team run together in Central Park that I no longer felt alone in my NF experience.

How do you balance working, training for marathons and advocacy/spreading awareness?

I consider myself very lucky in my job. I have a boss that is extremely understanding and accommodating to my NF. She is also very supportive of my marathon training and my involvement in the NF community. Because of that, finding time for everything is easier.

Ultimately, the thing that helps me to balance working, training for marathons and advocacy/spreading awareness is my calendar planner. I stick to an old-fashioned, physical, appointment book that allows me to block out what's going on each day and see an overview of the entire month. It helps me be prepared for anything, especially during busy months like May for NF Awareness Month. Most of all it allows me to see where I should take time for me so I never feel overwhelmed with everything that's happening.

You've been very open about your journey on social media (@leanna_runningnf2) and in the news (here, here, and here, to drop a few) - good days, hard days, quiet days - what does it mean to you to share your story so publicly, and raise awareness about NF both with people who are familiar with the condition and those who are not?

I started sharing my story online when I began my third drug trial. In a way it was like a video diary. Realizing it would reach people who didn't know about NF, I saw an opportunity to educate and also learn more myself. For a long time, I was very quiet about my NF. Prior to my right vestibular surgery, my NF was invisible and because of that, I came to ignore it myself. When the drug trial began, I knew this was something I needed to change. Something in my gut told me my NF experience was going to change drastically either during or after this trial. Posting and sharing kept me accountable, in a sense.

As time went on, I realized the impact I was making. I would receive comments thanking me for my bravery to speak up from those who felt they couldn't. Parents who had children with NF would reach out to me saying thank you for showing them their kids will be ok. I enjoy seeing the curiosity and eagerness to learn from those who don't know what NF is. And while there is a side of the internet that isn't always the nicest, I am very happy to say the positive comments significantly outweigh any negative ones.

I was recently asked if I'm viral enough to make money off my content. I said, "I'm not viral enough to make money, but I'm viral where I need to be and that's payment enough."

What has been the most surprising thing you've learned about yourself since sharing your NF journey so publicly?

I would have to say it would be my openness in sharing as much as I do. I'm actually quite an introvert, so to share updates from the recovery room or when I'm not looking my best was truly surprising.

What are you looking forward to in the upcoming year as the NF Ambassador?

I am looking forward to taking the role as the NF Ambassador on the road to bring awareness to the world. In 2025 I will be running with the NF Endurance team in the London Marathon, the Berlin Marathon, and the NYC Marathon. I am proud to represent the NF community in one of the best ways I know how. I am also looking forward to continuing to connect with my NF community in as many different ways as possible. I hope to continue to show people that life can be lived to the fullest, despite the odds against us.

Last question, if you had a time machine, what is something you'd go back and tell your 16-year-old self at that first doctor appointment, when they discovered the first tumor?

If I had a time machine to go back to talk to my 16-year-old self, I don't know if I would have even listened. At that time, I wanted any tumor I had out of my body as soon as possible, so I could go back to ignoring what was really happening to me. It was a difficult time for me. My 16-year-old self wouldn't even believe that I've become the person I am today. I suppose I would try and say, "Take your time." Looking back on things, I know I needed to experience everything I went through to get to where I am today.

Is there anything else you wish to add?

Accepting this kind of diagnosis isn't easy. We all go through our own trials to reach acceptance. But no matter how we get there or how long it takes us, there is a community waiting to welcome you.

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