Three Dublin Jerome High School juniors founded a nonprofit focused on rare diseases after a classmate was diagnosed with a rare genetic condition.
Aditya Domakuntla, Umesh Ummaleneni and Saharsh Chalumalla launched RareLink in March and secured 501(c) nonprofit status by July, CityScene Magazine reported Sept. 24. The group has since published a research paper in a peer-reviewed journal and partnered with Panera Bread for a fundraiser.
The inspiration was personal. A Jerome classmate lives with Williams Syndrome, a genetic condition caused by the spontaneous deletion of 26 to 28 genes on chromosome 7, according to the Williams Syndrome Association. The deletion affects the heart, blood vessels, development and learning. The condition occurs in an estimated one in 7,500 to 10,000 people worldwide, with an estimated 20,000 to 30,000 affected in the United States.
"Watching someone struggle with it really motivated us to do something to help them," Domakuntla told CityScene.
The three co-founders divided roles by their strengths and interests: research, social media and outreach to hospitals and businesses. They hold weekly Friday calls to coordinate. RareLink's published paper appeared in the Oxford Journal of Student Scholarship, a peer-reviewed student research journal. The group has also been in contact with professors at Case Western Reserve University and the University of Massachusetts.
Three executive members joined after the nonprofit gained its tax-exempt status: Saurin Sheth, Arnav Roopesh and Aarush Pagidala. RareLink's Instagram account had reached 800 followers as of the CityScene report.
Chalumalla told CityScene the goal is to expand into other communities and regions. The co-founders also hope to connect with the National Organization for Rare Disorders and the National Institutes of Health as they grow.




