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Stories of NF: Kevin A

By January 27, 2023December 4th, 2023Awareness, NF1, Story of NF

I would say I was first diagnosed not too long after I was born. My pediatrician, Dr. Michaels, was very good at what he did and knew right away it was neurofibromatosis.

When it comes to NF, I take things day by day. I do my best to not let it get to me. I feel like if it wasn't for NF, some of the experiences I have had to this point of my life wouldn't have happened. For that I am truly grateful. I am not going to let it stand in my way of achieving any future plans I have either. I've overcome some adversity to this point so why let things get in my way now?

My family and friends are very supportive. They have been from the very beginning. From 5K walks that started at Schenley Park then transitioned to days at the zoo, they are there every step of the way. I also participate in the Cupid's Undie Run here in Pittsburgh. I have had friends and family either volunteer or participate in this awesome event as well. I have made some amazing people at these events that I would gladly call my family.

Going to the NF Camp when I was younger was really an eye opener and helped me realize I was not alone. I remember having so much fun and making so many connections I didn't even think about having NF. It was an amazing experience and one I will always remember. One of my favorite memories from there was white water rafting down the Colorado through the Grand Canyon. Again, something I would not have experienced if it wasn't for having NF.

Another support system is a group on Facebook called Faces of Neurofibromatosis, which was started by an amazing woman Libby Huffer. It brings individuals from all over the world who have NF together and where we can be each other's support systems. Thanks to Libby whose motto is, “If we are not seen, we can't be heard” for creating such a wonderful support system.

Right now, I am working at Allegheny General Hospital as a Cardiac Monitor Technician. I'll be honest and say I am not sure if this is something I see doing the rest of my life, but this is where I am at right now.

My true passion is marketing and advertising. I would love to find something to help drive business to companies. I love being creative, so I would definitely like to utilize that gift in that process. Even advocating for non-profits and spreading awareness would be amazing!

I also enjoy an occasional cigar, beer from Allusion Brewing, hanging out with friends and family, going to the men's group at Church on Saturdays and Church Service on Sundays when my schedule allows for it and watching my Pittsburgh sports teams. Let's Go Pens, Steelers and Pirates!

If everything above isn't a glimpse into what has made me stronger than I don't know what to say. It's the people around you who can truly make a difference. So, if I can reach just one person and encourage them to put their best foot forward and not to give up, then I have accomplished my goal. We have to be there for each other and sometimes you have no idea what kind of domino effect words of positivity in someone's life can truly have.

I just want to thank everyone in my life who has always supported me from day one and continue to be by my side through it all. It truly means the world to me. You have helped me be the person I am today and made me Stronger Than NF!

“I have NF, NF does not have me!”

I would love to go to Ireland some day

I probably would have to say the ability to read minds.


Below is Kevin’s original poem, NF DOES NOT have me!, about living with NF:

I have NF
NF does not have me
If I didn't have NF
Then where would I be?

Cafe au lait spots, headaches, Fibromas
An optical nerve glioma
A tumor in my eye

The only in my family
A spontaneous mutation
What's this D O C?
What's the situation?

Take it day by day
That's all you can do
What can I say?
He has NF1 not NF2

Don't treat me differently
That's what young Kevin would say
I was loved unconditionally
Every night and every day

Growing up was rough
Not going to lie
School was tough
I barely squeaked by

But I was dedicated
Overcame adversity
Look how I graduated
From now LA Roche University

I can't take all the credit
I had a lot of support
Look it up on Reddit
You'll see the report

So much to still figure out
I just don't know
Sometimes I have to shout
Which way do I go

Although I cannot worry
I'll take it day by day
Even when things get blurry
I'll just have to remember to say

If I didn't have NF
Then where would I be
I have NF
NF does not have me!