Decoding NF for His Son & Thousands of Others

Author: Shane Smith

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Hi, I'm Shane, and this is Decoding NF.

This is a podcast for anyone with neurofibromatosis, whether that's NF1, NF2-related Schwannomatosis, uh, what they used to just call NF2, or Schwannomatosis. It's also for anyone that cares about someone with neurofibromatosis like me. My son has NF1. And when I first learned about his diagnosis, I wanted to know everything there was to know about NF.

I read every article I could get my hands on. I watched every video I could find and because I love podcasts, I went and looked for a podcast about neurofibromatosis. And I didn't find anything. Every year or so I would check again, and every single time I looked, there still wasn't a single podcast that I could find about NF.

So I created one. What you're listening to now is just a brief introduction. I wanted to give an idea of what to expect from this podcast and also why I created it. Depending on when you're listening to this, I'm hard at work on the first few episodes of Decoding NF.

My goal with this podcast is to create the thing that I wish I had access to right from the beginning and even now. So I'll be focusing on basic biology information, explaining how these diseases work and how they affect the body, but I also want to talk about practical things like connecting the NF community with the resources available and information about how you can care for your loved ones with neurofibromatosis better, or even just understand yourself better if you have neurofibromatosis.

Please feel free to reach out with questions or any thoughts about what I'm making. You can visit the website decodingnf.com and from there you can send me a message or you can just email me directly shane@decodingnf.com

I'm making this podcast to scratch my own itch, but it's as much for you listening as it is for me, so I want to make sure that I'm making something that helps people, and the only way I can really do that is if I get feedback from the community that I'm hoping to serve. Thank you and talk soon.

View all current episodes and sign up for future episode drops on Decoding NF's website.