Jimmy Lin of Rare Genomes Institute, Kevin Lustig of Assay Depot, Atul Butte of Stanford, and Hugh Reinhoff of MyDaughtersDNA.org talk about using open science and coalition building to combat rare diseases.
Atul Butte, MD, PhD is Chief of the Division of Systems Medicine and Associate Professor of Pediatrics, Medicine, and by courtesy, Computer Science, at Stanford University and Lucile Packard Children's Hospital. Dr. Butte trained in Computer Science at Brown University, worked as a software engineer at Apple and Microsoft, received his MD at Brown University, trained in Pediatrics and Pediatric Endocrinology at Children's Hospital Boston, then received his PhD in Health Sciences and Technology from Harvard Medical School and MIT.
Geneticist and founder of the Rare Genomics Institute, an organization that allows patients to crowdsource funds and genomes to accelerate research of their rare genetic diseases. Jimmy is the lead computational biologist for the ground-breaking cancer genome sequencing efforts from the Vogelstein Lab at Johns Hopkins. Their sequencing of the first 100+ cancer exomes in 5 different tissue types has helped lay the foundation for a revolution in cancer genomics. After completing his MD/PhD at Johns Hopkins, along with colleagues at Harvard and Yale, Jimmy started Rare Genomics Institute: a non-profit biotech venture that microfunds and enables genome sequencing for children with rare and orphan diseases.
Kevin has spent most of the past 28 years either managing research groups or running his own experiments at the bench. He is co-founder and CEO of Assay Depot, which owns and operates a network of online research exchanges that have the potential to dramatically improve how research outsourcing is done. In 2001, Kevin co-founded Kalypsys, a fully integrated drug discovery company that raised over $170 million in venture funding and put five drug candidates into human clinical trials.
Prior to Kalypsys, he directed lead discovery at Tularik, a highly successful biopharmaceutical company purchased by Amgen for more than $2 billion. He carried out postdoctoral work in Cell Biology at Harvard Medical School after receiving a PhD degree from Marc Kirschner’s laboratory in the Department of Biochemistry & Biophysics at the University of California, San Francisco (UCSF).
Kevin has a M.S. degree in Biochemistry from the University of Missouri-Columbia and an A.B. degree, magna cum laude, in Molecular and Cell Biology from Cornell University’s College of Arts and Sciences. His research discoveries have been published in Science magazine and other leading scientific journals and he has been awarded eight technology patents.
After training as a clinical scientist in the 1980s, Hugh Rienhoff joined the venture capital firm New Enterprise Associates, where he directed biotech investments. In 1998 he founded DNA Sciences, serving as chairman and CEO for four years. He was also a founding director of Healtheon/WebMD and Aurora Biosciences. His latest startup, FerroKin BioSciences, was acquired by Shire Pharmaceuticals in 2012. Rienhoff’s involvement in biotech became deeply personal in 2003, when his daughter was born with a mysterious defect that prevented her body from building muscle. His pleas for genetic analysis rejected, Rienhoff set out to do it himself, turning his attic into a home laboratory where he spent his nights combing through her DNA at the molecular level, hunting for clues that might suggest a treatment. That decade-long odyssey—ultimately successful—inspired him to start MyDaughtersDNA.org, a forum and advocate for other parents of children with undiagnosed diseases.