Arya Singh is a current PhD student at Weill Cornell Medicine in its Population Health Sciences department, and simultaneously holds a Research Program Coordinator position at NYU Grossman School of Medicine. She actively serves on boards for Hole in the Wall Gang Fund, DKI Health, and the Save Rare Treatments Taskforce -- for which she regularly serves as a key informant in congressional briefings. Arya was born with a rare genetic disorder (Spinal Muscular Atrophy), and her family founded the Spinal Muscular Atrophy Foundation -- funding over $150M to develop treatments for SMA, turning the disease from fatal with zero FDA approved drugs to chronic with three FDA drugs in Arya's lifetime. As such, Arya has over 20 years of clinical trial experience, being the first patient in the world to receive one of the three drugs; this experience led her to write and publish a children's book on the ethics guiding clinical research, Courageous Calla and the Clinical Trial. Her story has been featured in outlets including ABC News, Forbes, TODAY, The New York Times, among others -- and she speaks regularly for industry, universities, non-profits and government.