In February 2017, Desikan was diagnosed with amyotrophic lateral sclerosis, one of the Neurodegenerative Diseases that has been the focus of his research. His battle with the disease, both personal and scientific,[27] was featured in the Washington Post,[2] in a cover story by reporter Laurie McGinley. Unable to speak, walk or use his hands, Desikan continues to pursue research and has published more than 25 papers since his diagnosis.[28][29] His recent work focuses on development of a cardiovascular PHS for Alzheimer's disease and characterizing the genetic architecture of ALS.[28][29] The ALS Association featured his unique story and groundbreaking work in a 2018 article.[30] Boston University's Bostonia magazine featured Desikan in a 2018 article.[31] Desikan's story was also featured as a cover story on American Broadcasting Company's Good Morning America on Friday, November 23, 2018.[32][33] He died on July 14, 2019, two and a half years after being diagnosed with a rapidly-progressive form of ALS.[34]