James Heywood

James Heywood
Co-Founder, Chairman , PatientsLikeMe


An MIT engineer, Jamie entered the field of translational research and medicine when his
brother Stephen was diagnosed with ALS in 1998 at the age of 29. With experience in design,
information technology, systems modeling, neuroscience and industrial engineering, Jamie
brings a unique perspective to drug discovery and medicine. The scientific and business
innovations he developed at ALS TDI and PatientsLikeMe have been transforming the
intersection of biotechnology and pharmaceutical development, personalized medicine, and
patient care.

Currently, Jamie serves as chairman of PatientsLikeMe, where he provides the scientific vision
and architecture for its patient-centered medical platform. He co-founded the company in 2005
with his youngest brother, Benjamin, and friend, Jeff Cole. Named one of “15 companies that
will change the world” by CNNMoney, PatientsLikeMe is a personalized research and peer care
platform that allows patients to share in-depth information on treatments, symptoms and
outcomes. This novel open model allows clinicians, providers, and the pharmaceutical industry
to better understand diseases and the patient experience. Patients experience improved care
and the ability to actively partner with industry to accelerate and influence the development of
new treatments and biomarkers.

In 1999 shortly after Stephen was diagnosed, Jamie founded the ALS Therapy Development
Institute (ALS TDI), the world’s first non-profit biotechnology company, where he served as CEO
until 2007. Pioneering an open research model and an industrialized therapeutic validation
process, Jamie led ALS TDI to become the world’s largest and most comprehensive ALS
research program. The journal Nature captured succinctly the broader implications of ALS TDI’s
program, saying it succeeded in “prompting a broad reappraisal of the way that drugs are tested
in animal models of neurodegenerative disease in general.” The comprehensive in-vivo
validation program Jamie developed was unable to replicate the published preclinical studies of
the field that lead to human trials calling into question the standards that allowed many drugs to
be tested on patients. Today, ALS TDI continues to grow and runs large-scale discovery and
informatics program focused on finding an effective pathway for treating ALS.

Jamie is a frequent speaker, media pundit and an active investment advisor. His work has been
profiled in the New Yorker, New York Times Magazine, BusinessWeek, 60 Minutes, Science,
Nature as well as in Pulitzer Prize winner Jonathan Wiener’s biography, His Brothers Keeper
and the Sundance award-winning documentary, “So Much So Fast.”


Location: Grand Ballroom B
James Heywood (PatientsLikeMe )
Average rating: ****.
(4.92, 13 ratings)
What would happen if we measured health, disease, and it's impact in one connected network? A proposal to break down the silos and re-index research around the individual. Read more.


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