Early Experiences: Two Brothers, One Diagnosis, and the Beginning of a Shared Mission
Sahil and Shilp Shah grew up together in Utah in a close-knit family shaped by curiosity, compassion, and a deep commitment to caring for others. Both of their parents are physicians, and from an early age, the brothers were surrounded by conversations about medicine, resilience, and helping people navigate difficult moments in life. It was within this environment that their journey with neurofibromatosis type 1 (NF1) began.
Sahil was diagnosed with NF1 as an infant following a spontaneous genetic mutation, meaning no one else in the family had the condition. For many years, the diagnosis existed mostly in the background of his childhood. But around the age of nine, as tumors began developing in visible areas around his head and neck, NF became something he could no longer ignore. Searching online for answers introduced him to information that felt overwhelming and isolating for a child trying to understand what the future might hold. 
Without other young people around him living with NF, it was difficult for Sahil to find language for what he was experiencing or imagine what life with the condition might look like over time. Through it all, his family remained his strongest source of support. His parents helped explain the condition in ways that felt reassuring and manageable, and their care showed up in both practical and deeply personal ways. One moment that stayed with him was a promise his mother made when he was young: she would not eat ice cream until he turned twelve the age when the risk window for optic gliomas typically decreases. On his twelfth birthday, they celebrated together with ice cream for the first time in years.
For Shilp, who is five years older, understanding his brother’s diagnosis came with its own challenges. As a teenager, he watched Sahil experience severe migraines and pain that could suddenly interrupt his day, and he often felt unsure how to help. At the time, there were no approved treatments for NF, and the unpredictability of the condition made it difficult to know what support should look like.
Those early experiences growing up together, navigating uncertainty as a family, and recognizing the absence of a pediatric NF community would later shape the brothers’ shared commitment to creating something they themselves had once needed: a space where children living with NF could feel seen, supported, and connected.
The Moment They Realized Something Needed to Change
As Sahil searched for others his age living with NF, he discovered something surprising there were very few spaces designed specifically for children. While online groups existed, many were geared toward adults. For a young person trying to understand a diagnosis, those spaces didn’t always feel accessible or relatable. The absence of a pediatric-focused community stayed with both brothers. Over time, what began as bedside conversations between them evolved into an idea: what if children with NF had a way to share their experiences in a way that didn’t rely only on words? That idea became SketchNF.
The Birth of SketchNF: Why Art Became the Language of Connection
The inspiration for SketchNF began during a summer Shilp spent working at Boston Children’s in the Emergency Department of the Intensive Care Unit. There, he saw children using coloring and artwork to process difficult medical experiences in ways that felt natural and empowering. Around the same time, Sahil was navigating another migraine episode back home. The distance between them and the difficulty of describing what living with NF felt like sparked a realization: maybe art could help children express what words sometimes couldn’t.
Together, they created SketchNF as a way to give young people living with NF a creative outlet to tell their stories while also raising awareness about the condition. When they launched their first art auction nearly four years ago, they expected a small response maybe a handful of submissions. Instead, artwork arrived from across the United States and even internationally. Families they had never met were sharing their stories. Children were creating powerful visual expressions of resilience, identity, and hope. For Sahil, it felt like the NF community had come together around something deeply personal.
What Participation in SketchNF Looks Like for Families
SketchNF is designed to be simple, accessible, and completely free for participating families. Each year, children with NF can sign up to receive a creative kit that includes drawing paper, instructions, and a return envelope. Participants are invited to create artwork about anything meaningful to them whether that reflects their NF journey or something they simply love. Families can also choose to share their story alongside their artwork.
These pieces are then featured in an annual online silent auction, where supporters can take home original artwork while learning about the child behind it. In many cases, buyers and artists are even connected afterward, helping build lasting relationships across the community. Every participant’s story is also highlighted on the SketchNF website, ensuring that each voice is seen and celebrated. If you would like to participate in this year’s 2026 SketchNF auction, Click Here to Register
Stories That Stay with Them
Over the years, many pieces of artwork have left a lasting impact on Sahil and Shilp. One participant created a self-portrait that included his prosthetic leg after losing part of his limb due to pseudoarthrosis, a complication of NF. Rather than focusing on what he had lost, his story centered on everything he continued to do fishing, hunting, and pursuing the activities he loved. Another participant named Charlie submitted drawings inspired by his passion for football as a Baltimore Ravens fan. Later, when his artwork was featured on a Times Square billboard after winning the auction, Sahil had the chance to meet him in person. Moments like these continue to remind both brothers why SketchNF matters.
Creating a Space Where Children Feel Seen and Connected
For Sahil, SketchNF represents the kind of community he wished existed when he was younger. Seeing former participants later advocating on Capitol Hill alongside families and researchers has been especially meaningful. Many of the children who once shared their artwork are now becoming voices for change within the NF community. For Shilp, one of the most powerful parts of SketchNF has been watching children create artwork even while undergoing treatment. Some participants have submitted handprints from hospital beds during chemotherapy. Others have shared drawings created during long clinic visits. Despite everything they were facing, they wanted their stories included. Providing space for those moments continues to be one of the most meaningful aspects of the project.
How SketchNF Has Grown Beyond Their Expectations
Since its first auction, SketchNF has grown into something much larger than either brother imagined. 
One of its most impactful expansions has been the creation of a children’s coloring book featuring fourteen stories from participants living with NF. Designed as a resource for newly diagnosed families, the book helps children understand NF through relatable experiences rather than frightening medical images online, like Sahil experienced in his earlier years when searching for answers about his medical diagnosis.
Today, the coloring book is distributed through NF clinics across the country and has even reached its first international partner, Centre Hospitalier de ‘Université de Montréal in Montréal, Canada. More recently, SketchNF has partnered with Positive Exposure to bring participant artwork into a gallery setting in New York City. The exhibition will highlight a mosaic of stories from children with NF and others navigating rare diseases, expanding the reach of their mission even further.
They also launched Rare Square, an online platform where individuals affected by rare diseases can share artwork, stories, and fundraising pages, helping build a growing visual record of the rare disease community.
Building SketchNF Together as Brothers
Creating SketchNF has strengthened Sahil and Shilp’s relationship in unexpected ways. For Sahil, the project reflects how deeply his brother cares not just about him, but about the entire NF community. For Shilp, building SketchNF transformed feelings of helplessness into action. Even while living in different cities and pursuing demanding academic paths in medicine and research, SketchNF gives them a shared purpose and a reason to stay connected every day. It remains a thread that continues to bring them together.
Looking Ahead: What Comes Next for SketchNF
As SketchNF continues to grow, Sahil and Shilp hope to expand opportunities for young people living with NF beyond storytelling alone. From July 7th to August 14th Positive Exposure in NYC will be hosting a gallery featuring the artwork from SketchNF participants. If you’d like to One future goal is to create scholarships that support students interested in pursuing NF research, helping inspire the next generation of scientists and clinicians working toward better treatments. They also hope to continue strengthening connections within the pediatric NF community ensuring that children always have a place where they can share their experiences and feel understood. Ultimately, their vision is simple: to make SketchNF a recognizable and lasting space of belonging for families navigating NF.
How can you support the mission of SketchNF
SketchNF is built on a simple but powerful idea: one sketch at a time, children with NF can share their stories, build community, and help move research forward.
Donate to support their work
Contributions help provide creative kits for participants, expand programming, and support NF research through partners like NF Network.
donorbox.org/sketchnf
Follow SketchNF on social media
Stay connected with participant stories, upcoming auctions, and new opportunities to engage with the community.
Share their story
One of the most powerful ways to support rare disease advocacy is simply by helping more people learn about neurofibromatosis and the children whose lives are impacted by it. Every sketch shared. Every story told. Every connection made brings us one step closer to greater awareness and ultimately, better outcomes for families living with NF.