Shilp Shah receives a Donald A. Strauss Public Service Scholarship and has started an organization with his brother Sahil for pediatric neurofibromatosis.

Third-year UCLA bioengineering major Shilp Shah and his brother Sahil have formed a support organization to help people who suffer from a rare medical condition called pediatric neurofibromatosis. Shilp was recently awarded a $15,000 scholarship from the Donald A. Strauss Public Service Scholarship Foundation and plans to use the funds to support their organization, called SketchNF.

Shilp was 14 years old when he was informed about the tumors in his younger brother, Sahil’s, neck. Sahil, who was 9 at the time, was diagnosed with neurofibromatosis type 1, a cancer predisposition syndrome, at the age of 1. Sahil had been symptom-free until the age of 9. Over the next seven years, Shilp could only watch as Sahil endured nights of splitting migraines, wracking neck pain, and even surgery to remove the tumors in his skull. He did his best to support him but Shilp could never truly understand what he was going through; Sahil needed people that could empathize with his situation.

But as they looked online, it was difficult to find an accessible pediatric neurofibromatosis (NF) community, something that would make Sahil feel part of a greater community in the fight. The brothers wanted to make a change for other kids like Sahil. This was the birth of SketchNF.

SketchNF is dedicated to raising funds and creating a network for pediatric NF patients one sketch at a time. Its mission is to empower children with NF by allowing them to share their stories and hopes through the form of art. By auctioning original drawings from patients across the country, the organization aims to raise money for NF research and support organizations in pursuit of a cure. The pair also envision that every person who purchases a drawing will feel a personal connection with that child, knowing that their donation has directly changed their life.

In parallel, Shilp Shah was recently announced as a recipient of a $15,000 scholarship from the  Donald A. Strauss Public Service Scholarship Foundation. It was established as a memorial to the late Don Strauss, a longtime executive with Beckman Instruments in Fullerton, California and awards $15,000 scholarships to as many as 15 California college sophomores and juniors annually.

The Strauss Scholarship will be instrumental in allowing SketchNF to reach as many children across the nation in the NF community. By helping alleviate the initial financial burden of shipping out packages, it will allow SketchNF to focus more on growing its network and highlighting the stories of each NF child. Furthermore, SketchNF aims to use part of the scholarship to build a personalized online community specifically for children and young adults with NF to connect with each other.

Shilp and Sahil both hope their organization will help ensure no child will ever feel isolated by their situation. Another goal of the organization is to create a picture book that highlights the stories of NF youth while promoting health literacy regarding the condition as many healthcare providers are not familiar with NF. Lastly, SketchNF aims to form long-lasting collaborations with NF clinics and hospitals around the nation to continue patient advocacy and sustainable support.

Recently, Shilp and his brother completed the SketchNF auction, selling more than 50 pieces of art from 20-plus individuals with NF from across the nation. Overall, they were able to raise $3,815, which will go towards both NF research and support groups, as well as future pediatric NF initiatives. In addition to this accomplishment, during this past year, Shilp has been working within the UCLA David Geffen School of Medicine in Professor-In-Residence Marco Giovannini’s lab, to research and develop novel therapeutics methods for NF, alongside his brother, who began researching in the same lab this summer to help push forward the frontier of NF research.