SketchNF: Empowering the Pediatric NF Community

Author: Sahil Shah

Published On: 01/27/2023

Hi, my name is Sahil Shah, and I have NF1. Growing up, I was constantly reminded of my condition by the various medical appointments and treatments that I had to undergo. I was embarrassed about the café-au-lait spots on my skin and frustrated by the constant chronic pain from the neurofibromas that interrupted my everyday life. I first felt “bumps” pop up all around my body at the age of nine and I wondered why nobody around me was going through the same thing. I went into my first appointment with my NF specialist and remember being terrified at the fact that my “bumps” were really tumors and that I had an increased risk of cancer due to NF1. As I returned home from the appointment, I made the mistake of looking up NF1 online and immediately became confused and anxious; was this what was going to happen to me?

Over the course of the next year or so, one of the tumors on my forehead continued to grow at a rapid rate and my NF doctor decided it was time to get surgery. Surgery was very scary for me, and even though it went well, I still could not shake the images that I had seen on the internet out of my head. As the years went on, I developed plexiform neurofibromas in my neck that have often caused me to have intense migraines and headaches.

I have tried explaining the pain and the frustration to my family, but because they do not have NF, they weren’t able to truly understand what I was going through. Because of this I often felt alone in my battle with NF, with no one to explain my pain too. But one day this summer, while expressing the pain from a migraine I had the night before to my brother, we thought to each other, “Why was it so hard to find an accessible online pediatric NF community that could relate to what kids with NF were going through”.

This is where SketchNF was born. As my brother and I searched the internet searching for these communities, we stumbled across Doodle4NF, a previous NF initiative. We saw that Doodle4NF had celebrities create drawings and auctioned them off, and we thought, "what if we adapted this concept over to the pediatric NF community and instead of celebrities doing the drawings, it would be the kids themselves?" Not only would this empower children with NF by allowing them to fight for themselves and to express their own battles and emotions that have come along with the condition, but we believed that, through art and social media, we could create a wide-spanning pediatric community that would ensure no child with NF would ever have to feel alone again. 

Our mission is simple. SketchNF is dedicated to raising funds and creating a network for pediatric NF patients one drawing at a time. By auctioning off these original drawings, the money raised would go towards NF research and support organizations like NF Network. We also believe that every person who purchases a drawing will feel a personal connection with that child, knowing that their donation has given back directly to the effort of changing their life. This will increase their engagement in the NF community and overall awareness as well. Lastly, our goal is to grow a community nationwide, and as it grows, the number of youth SketchNF can empower increases as well.

How will this work? We will send out individual packages that contain directions and supplies for each kid to create their artwork, but they can use their own supplies as well! After they finish their drawings, they will be sent back to us where we will auction them off during NF Awareness Month. At the end of the auction, the artwork will go to the highest bidder and they will also be connected with the child who created it. Additionally, the highest-selling drawing will be given a prize courtesy of NF Network! Click HERE to access the SketchNF website.

Join us in the mission to provide support and resources to those living with neurofibromatosis. Learn more about the NF Network here, and stay iNFormed on future updates from SketchNF and other NF news here.