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Meet Our 2022 NF Ambassador: Eddie Purtell

By October 27, 2021January 17th, 2024Story of NF

Eddie was diagnosed with NF at just one-month-old. He was born with an optic nerve glioma behind his left eye leading to it being removed at 3 years old. Since then he has had well over 20 procedures but never let that stop him from achieving all he has to this day.

Eddie has run in 14 half marathons, 11 of which have been to raise funds for NF, and the Chicago Marathon. With these efforts, he has raised over $130,000 to find a cure for NF. On top of that, he is also involved in the Children’s Tumor Foundation’s Volunteer Leadership Council and Junior Board.

On Monday, November 15, during the Children’s Tumor Foundation 2021 National Gala, Eddie will be honored as the 2022 NF Ambassador. This award is bestowed upon an individual with NF to recognize their courage living with the disorder, their personal efforts to further the Foundation goals of research, public awareness, and patient support. We asked Eddie to tell us more about his journey.


How did you first learn about your diagnosis? 

I really learned about and understood my diagnosis when I was about seven years old. However, I was diagnosed at birth and had my left eye removed when I was three.

How does living with NF impact your life?

Having NF made sports more difficult being blind in one eye. I have always had to be a little more cautious, especially when skiing.

What’s the most difficult obstacle you’ve faced?

Having my NF be visible being judged based on the way I look and having learning disabilities. I overcame this by working hard and not caring what random people think of me.

Any recent milestones or causes for celebrations recently?

Being the 2022 NF Ambassador! Every year when I finish the half marathon and see how much I’ve raised even if I didn’t hit my goal, as I usually set it pretty high.

What’s the best piece of advice you’ve ever gotten?

To quote the great Vince Lombardi “It’s not whether you get knocked down, it’s whether you get up.” Anyone with NF will have to deal with some difficult situations, so no matter how many times you get knocked down, always remember to get up and keep fighting.

Why did you get involved with NF Endurance? What do you enjoy about the team?

To raise money for NF to find a cure and at the time to be in better shape for the upcoming soccer season. The thing I love about the team is how supportive and helpful they are.

How did you feel when you found out you were the 2022 NF Ambassador?

I felt very honored and accomplished. It felt good to be recognized for the fundraising I’ve done for CTF over the years running half marathons and marathons.

What are you looking forward to (as NF Ambassador)? What are you hoping to bring to the NF community?

I’m looking forward to the Gala and being able to meet others with NF during my time as the NF Ambassador. I am hoping to learn other ways to fundraise and motivate others to do endurance events.

What has the last 18 months/the pandemic been like for you?

With everything shut down, there has been a lack of social life for me as I have been working remotely for so long, and still am. It was difficult with not having much social life, especially during the workweek. Having things shut down made it harder to meet up with friends on the weekend.