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Meet the 2017 NF Ambassador

By October 13, 2016December 5th, 2023NF1, Special Events, Story of NF

Sarah Rodbell was diagnosed with neurofibromatosis type 1 when she was 10 years old. When her mom was brushing her hair she found a bump. Later, after a biopsy, they found out it was a cancerous tumor. Thankfully after two surgeries she has been cancer free since 2009.

Sarah started fundraising for CTF when she was 11 years old and hasn’t stopped. Most recently, Sarah helped plan and organize the NYC NF Walk, held a bake sale at her school and this past August, fundraised for her uncle when he participating in the IRONMAN Mont Tremblant on behalf of the Children’s Tumor Foundation. Sarah pushes herself every day and tries to make each day memorable.

On Wednesday, October 19 at the New York Gala, Sarah will be honored as the 2017 Children’s Tumor Foundation Ambassador. This award is bestowed upon an individual with NF to recognize their courage living the disorder, and their personal efforts to further the Foundation goals of research, public awareness and patient support. We asked Sarah to tell us more about her journey and her dreams for the future.

How did you first learn about your diagnosis?
I was 10 years old when I first learned I had NF.

How does living with NF impact your life?
NF gives me headaches that can be manageable, but also can be really bad. It also makes me feel really itchy and it sometimes feel weird to be in my own skin.

What’s the best piece of advice someone has given you?
Push myself and don’t look back.

What are you looking forward to most in the upcoming year (2017)?
Getting ahead in the school, being the CTF Ambassador and working more on my photography.

What’s your idea of the perfect day?
It’s raining and quiet, I go for a walk in the park where it’s peaceful because no one is there and just take pictures and listen to music that makes me feel warm inside. I’d come home, put a log on the fireplace and watch some funny movies or rom-coms.

If you could have dinner with anyone – living or not – who would it be?
My grandpa, at Three Guys and have our “second breakfast”

What’s one song you will never skip on your playlist?
Queen’s “Bohemian Rhapsody”

Where is the best pizza place you’ve ever been to?
Mama Pizzeria, on the upper west side, best white pizza I’ve ever had!

Upcoming movie you’re willing to wait on line for to see at the movie theatre?

Any idea of what you’d like to do after you graduate high school/college?
I would like to go around the U.S. climbing mountains taking pictures, being one with nature and then after that start a photography business.

How do you stay motivated?
I try for the most part to look into the future. I look and think ahead to keep my head held high.

What would you say to others who find themselves facing similar NF challenges?
Do what you love and keep your mind off of NF; if you keep think about you’ll get sad and won’t think positively of NF and the community of people who can help you and be your friends.

Anything else you want to add? Something you want the NF community to know about you?
I am a passionate person who is ready for a challenge. I am a hard worker who is passionate about what I do. I am ready for anything.