James Heywood (born October 4, 1966, in
London
London is the capital and largest city of England and the United Kingdom, with a population of just under 9 million. It stands on the River Thames in south-east England at the head of a estuary down to the North Sea, and has been a majo ...
, England) is an American
MIT
The Massachusetts Institute of Technology (MIT) is a private land-grant research university in Cambridge, Massachusetts. Established in 1861, MIT has played a key role in the development of modern technology and science, and is one of the m ...
mechanical engineer
Mechanical may refer to:
Machine
* Machine (mechanical), a system of mechanisms that shape the actuator input to achieve a specific application of output forces and movement
* Mechanical calculator, a device used to perform the basic operations of ...
who founded with his family the
ALS Therapy Development Institute (ALS TDI) when his younger brother
Stephen Heywood
Stephen Heywood (April 13, 1969 – November 26, 2006) was an American builder and self-taught architect, specializing in the renovation of old houses.
He was diagnosed with ALS in 1998, at the age of 29. He was the subject of '' His Brother ...
was diagnosed with
amyotrophic lateral sclerosis
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most comm ...
(ALS) in December 1998. He is currently a director at
AOBiome
AOBiome is a Boston-based biotech company focused on transforming human health through products that restore ammonia-oxidizing bacteria (AOB). The company is developing a novel class of therapeutics to improve skin health, hypertension, and o ...
, as well as founder and
CEO
A chief executive officer (CEO), also known as a central executive officer (CEO), chief administrator officer (CAO) or just chief executive (CE), is one of a number of corporate executives charged with the management of an organization especially ...
of
PatientsLikeMe
PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and informat ...
.
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
Biotechnology is the integration of natural sciences and engineering sciences in order to achieve the application of organisms, cells, parts thereof and molecular analogues for products and services. The term ''biotechnology'' was first used b ...
company and pioneered a new model for accelerating
translational research
Translational research (also called translation research, translational science, or, when the context is clear, simply translation) is research aimed at translating (converting) results in basic research into results that directly benefit humans. ...
by directly hiring scientists to develop treatments outside of the academic and for-profit
corporate architecture. The institute's initial approach focused on
gene therapy
Gene therapy is a medical field which focuses on the genetic modification of cells to produce a therapeutic effect or the treatment of disease by repairing or reconstructing defective genetic material. The first attempt at modifying human DN ...
and
stem cells
In multicellular organisms, stem cells are undifferentiated or partially differentiated cells that can differentiate into various types of cells and proliferate indefinitely to produce more of the same stem cell. They are the earliest type o ...
and ALS TDI was the first to publish on the safety of the use of stem cells in ALS patients.
ALS TDI then pioneered a novel high-throughput
in-vivo
Studies that are ''in vivo'' (Latin for "within the living"; often not italicized in English) are those in which the effects of various biological entities are tested on whole, living organisms or cells, usually animals, including humans, and pl ...
validation program
that tested more treatments in
preclinical studies
In drug development, preclinical development, also termed preclinical studies or nonclinical studies, is a stage of research that begins before clinical trials (testing in humans) and during which important feasibility, iterative testing and drug ...
than all other labs combined and led to two drugs being tested in
clinical trial
Clinical trials are prospective biomedical or behavioral research studies on human participants designed to answer specific questions about biomedical or behavioral interventions, including new treatments (such as novel vaccines, drugs, dietar ...
s. The culmination of this work is a paper published in the journal "Amyotrophic Lateral Sclerosis"
that identified crucial errors present in many existing preclinical studies that could lead to
false positive
A false positive is an error in binary classification in which a test result incorrectly indicates the presence of a condition (such as a disease when the disease is not present), while a false negative is the opposite error, where the test result ...
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
A ventilator is a piece of medical technology that provides mechanical ventilation by moving breathable air into and out of the lungs, to deliver breaths to a patient who is physically unable to breathe, or breathing insufficiently. Ventilators ...
accidentally disconnected shortly before ALS TDI began a comprehensive program to use industrial discovery approaches to understand the disease. In August 2007, after serving as ALS TDI's
CEO
A chief executive officer (CEO), also known as a central executive officer (CEO), chief administrator officer (CAO) or just chief executive (CE), is one of a number of corporate executives charged with the management of an organization especially ...
for nine years and having raised $50m in funding, Heywood stepped down and joined the Institute's board of directors. 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 is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and informat ...
. 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
CNN Business (formerly CNN Money) is a financial news and information website, operated by CNN. The website was originally formed as a joint venture between CNN.com and Time Warner's ''Fortune'' and ''Money'' magazines. Since the spin-off of Time ...
.
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
The Pulitzer Prize () is an award for achievements in newspaper, magazine, online journalism, literature, and musical composition within the United States. It was established in 1917 by provisions in the will of Joseph Pulitzer, who had made h ...
-winning author
Jonathan Weiner
Jonathan Weiner (born November 26, 1953) is an American writer of non-fiction books based on his biological observations, focusing particularly on evolution in the Galápagos Islands, genetics, and the environment.
His latest book is ''Long for ...
, in the biography ''
His Brother's Keeper: A Story from the Edge of Medicine''. He has been profiled in
The New Yorker
''The New Yorker'' is an American weekly magazine featuring journalism, commentary, criticism, essays, fiction, satire, cartoons, and poetry. Founded as a weekly in 1925, the magazine is published 47 times annually, with five of these issues ...
,
Wall Street Journal
''The Wall Street Journal'' is an American business-focused, international daily newspaper based in New York City, with international editions also available in Chinese and Japanese. The ''Journal'', along with its Asian editions, is published ...
,
New York Times Magazine
''The New York Times Magazine'' is an American Sunday magazine supplement included with the Sunday edition of ''The New York Times''. It features articles longer than those typically in the newspaper and has attracted many notable contributors. ...
,
60 Minutes II,
New England Journal of Medicine
''The New England Journal of Medicine'' (''NEJM'') is a weekly medical journal published by the Massachusetts Medical Society. It is among the most prestigious peer-reviewed medical journals as well as the oldest continuously published one.
Hist ...
, and
the Economist
''The Economist'' is a British weekly newspaper printed in demitab format and published digitally. It focuses on current affairs, international business, politics, technology, and culture. Based in London, the newspaper is owned by The Econo ...
. 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
The Sundance Film Festival (formerly Utah/US Film Festival, then US Film and Video Festival) is an annual film festival organized by the Sundance Institute. It is the largest independent film festival in the United States, with more than 46,66 ...
. In October 2009, Heywood gave a talk at TEDMED on his brother's condition and how it inspired him to found
PatientsLikeMe
PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and informat ...
.
References
External links
ALS Therapy Development Instituteis a non-profit biotechnology center, solely focused on ALS research. ALS TDI operates the world's largest research and development program and research center.
PatientsLikeMeis an online community for people affected by life-changing illnesses, including ALS
*
PBS Frontline's website about James Heywood and his brother Stephen
{{DEFAULTSORT:Heywood, James
1966 births
Living people
American nonprofit chief executives
Massachusetts Institute of Technology alumni
English emigrants to the United States