Meet our Board of Directors
Sanath Kumar Ramesh
Founder & CEO of OpenTreatments Foundation
Sanath is a bold and visionary software leader, open source pioneer and a rare disease drug developer. In his career, he has built and launched several successful open source software products. He is now using open source software to enable treatments for 400 million patients worldwide affected with rare genetic diseases through his non-profit organization, OpenTreatments Foundation. He is building the world’s first software platform to decentralize drug development and empower anyone in the world to create a treatment for a genetic disease. He is also the father of a 2 year old boy who is one of 9 kids worldwide with an ultra-rare genetic disease called SSMD (curegpx4.org)
Plavi Mittal
Dr. Mittal is the Founder, and the former President and CEO of the Jain Foundation, for 13 years from (2005 -2017) focused on a cure for an orphan disease, called Dysferlinopathy. Under her leadership, the Jain Foundation funded ~$50M towards diagnostics, research and clinical trials of this disease. The Jain Foundation’s operating model is emulated by many other rare disease foundations. She earned a Ph.D. in Biology from Brandeis University and performed postdoctoral work in molecular oncology at Harvard Medical School.
Ethan O. Perlstein
Ethan is a biotech entrepreneur and genetic disease cure sherpa. In 2014, Ethan founded Perlara PBC, the first biotech public benefit corporation that is co-developing new treatments of genetic disease in joint venture partnership with highly motivated families. In addition to being CEO of Perlara, Ethan is the CEO of the recently formed joint venture spun out of Perlara called Maggie’s Pearl, which is developing epalrestat as a platform therapy for congenital disorders of glycosylation (CDG), starting with PMM2-CDG.
Julia Vitarello
In December 2016, Julia founded Mila's Miracle Foundation (MMF) upon learning that her seemingly healthy six-year-old daughter Mila had Batten disease, a devastating genetic condition. In an unprecedented collaboration led by Julia and Dr. Timothy Yu from Boston Children’s Hospital, Mila became the first person in the world to receive a drug tailored to just one person - affectionately named milasen. Driven by a sense of hope and obligation, Julia is on a mission to ensure that truly personal medicines become accessible to children across hundreds of rare diseases who otherwise would have no chance. Through MMF, Julia has also initiated the work toward a novel gene therapy targeting the MFSD8/Batten CLN7 gene, hosts scientific meetings, funds basic science projects in the US and Europe, and speaks at scientific meetings and conferences across the country.