Jamie Heywood

James Heywood (born October 4, 1966, in London, England) is an American MIT mechanical engineer who founded with his family the ALS Therapy Development Institute (ALS TDI) when his younger brother Stephen Heywood was diagnosed with amyotrophic lateral sclerosis (ALS) in December 1998. He is currently a director at AOBiome, as well as founder and CEO of PatientsLikeMe.^[1]

ALS Therapy Development Institute[]

Conceived while James Heywood was moving cross country in March 1999 to be with his family, ALS TDI became the world's first non-profit biotechnology company and pioneered a new model for accelerating translational research by directly hiring scientists to develop treatments outside of the academic and for-profit corporate architecture.^[2] The institute's initial approach focused on gene therapy and stem cells and ALS TDI was the first to publish on the safety of the use of stem cells in ALS patients.^[3] ALS TDI then pioneered a novel high-throughput in-vivo validation program ^[4] that tested more treatments in preclinical studies than all other labs combined and led to two drugs being tested in clinical trials. The culmination of this work is a paper published in the journal "Amyotrophic Lateral Sclerosis"^[5] that identified crucial errors present in many existing preclinical studies that could lead to false positive results. The results suggest that false positive results may rest with the methods used by researchers and not the models themselves. The paper has clear clinical implications, as ALS TDI was unable to replicate a number of prior animals studies from the field that led to clinical trials that ultimately failed in humans.

Stephen Heywood died in the fall of 2006 when his ventilator accidentally disconnected shortly before ALS TDI began a comprehensive program to use industrial discovery approaches to understand the disease.^[6] In August 2007, after serving as ALS TDI's CEO for nine years and having raised $50m in funding, Heywood stepped down and joined the Institute's board of directors.^[7] He retains the title "Alex and Brit d’Arbeloff Founding Director" in honor of their support and involvement in the creation of ALS TDI.

PatientsLikeMe[]

In 2005, Heywood joined his youngest brother Ben and longtime friend Jeff Cole to found PatientsLikeMe. PatientsLikeMe operates disease-specific communities and allows for dialogue between patients about how to improve care and accelerate research.

PatientsLikeMe is a privately funded company that aggregates its users health information and sells it to the pharmaceutical and medical device industry. PatientsLikeMe was named one of "15 companies that will change the world" by CNN Money.^[8]

Currently Heywood serves as chairman of PatientsLikeMe and is focused on developing a broad patient-centered platform that improves medical care and accelerates the research process by measuring the value of treatments and interventions in the real world.

Biographies and media[]

Heywood has been profiled by the Pulitzer Prize-winning author Jonathan Weiner, in the biography .^[9] He has been profiled in The New Yorker,^[10] Wall Street Journal, New York Times Magazine,^[11] 60 Minutes II,^[12] New England Journal of Medicine,^[13] and the Economist. In 2006, So Much So Fast, an award-winning documentary chronicling Jamie and Stephen and the ALS Therapy Development Institute, premiered at Sundance Film Festival. In October 2009, Heywood gave a talk at TEDMED on his brother's condition and how it inspired him to found PatientsLikeMe.^[14]

References[]

External links[]

• ALS Therapy Development Institute is a non-profit biotechnology center, solely focused on ALS research. ALS TDI operates the world's largest research and development program and research center.
• PatientsLikeMe is an online community for people affected by life-changing illnesses, including ALS
• Jamie Heywood at TED
• PBS Frontline's website about James Heywood and his brother Stephen