by Rachad Davis
January 27, 2017
Co-Founder and Chairman,
Jamie is a leader in engaging patients, understanding their needs and in applying entrepreneurial smarts and drive to improving the treatment and delivery available to them. He is a passionate believer in transparency and collaboration.
As the founder of PatientsLikeMe — an innovative web community that allows patients to pool their experiences of disease and treatment — Jamie took an innovative, bottom-up approach to both patient support and medical research. The 250,000+ patients log the progress of their disease in very fine detail, including their treatments and prescriptions, any side effects they experience and much more. This has two radical consequences. First, patients can look at others’ logs and even message each other to learn about the real-world experiences of patients like them. Second, this creates a treasure trove of data about a wide range of illnesses and treatments far beyond what can be captured in traditional clinical studies. It’s a groundbreaking approach that is speeding up the pace of research, democratizing patient data, and improving the dialogue between patients and physicians.
In addition to founding PatientsLikeMe, Jamie is also the founder of ALS Therapy Development Institute (TDI), the world’s first non-profit biotechnology company. He founded the company following his brother Stephen’s diagnosis of ALS (Lou Gehrig’s disease) in 1998. Since then, ALS TDI has broken new ground on many fronts and has become recognized as one of the most promising and innovative research organizations in action. Its achievements include an industrialized therapeutic validation process and one of the world’s leading ALS drug discovery programs. ALS TDI was also the first organization to run an open research program, posting the results of its studies in real time.
Jamie’s work has been the subject of His Brother’s Keeper, a book by Pulitzer Prize-winning author Jonathan Weiner, and So Much So Fast, a Sundance award-winning documentary. He has also been profiled in The New Yorker and on 60 Minutes.
An MIT engineer, Jamie is an active investor and advisor to startups, companies, and non-profits working to improve the way that biomedical research is conducted.