Jamie Heywood
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James Heywood (born October 4, 1966, in
London London is the Capital city, capital and List of urban areas in the United Kingdom, largest city of both England and the United Kingdom, with a population of in . London metropolitan area, Its wider metropolitan area is the largest in Wester ...
, England) is an American
MIT The Massachusetts Institute of Technology (MIT) is a private research university in Cambridge, Massachusetts, United States. Established in 1861, MIT has played a significant role in the development of many areas of modern technology and sc ...
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 o ...
who founded with his family the
ALS Therapy Development Institute The ALS Therapy Development Institute (ALS TDI) is a non-profit biotechnology research organization focused on finding treatments for amyotrophic lateral sclerosis (ALS). With a staff including more than 30 scientists, it operates a research and d ...
(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—in the United States—Lou Gehrig's disease (LGD), is a rare, Terminal illness, terminal neurodegenerative disease, neurodegenerative disorder that results i ...
(ALS) in December 1998. He is currently a director at AOBiome, as well as founder and
CEO A chief executive officer (CEO), also known as a chief executive or managing director, is the top-ranking corporate officer charged with the management of an organization, usually a company or a nonprofit organization. CEOs find roles in variou ...
of
PatientsLikeMe PatientsLikeMe (PLM) is an integrated community, health management, and real-world data platform. The platform currently has over 830,000 members who are dealing with more than 2,900 conditions, such as ALS, MS, and epilepsy. Data generated by p ...
.


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 a multidisciplinary field that involves the integration of natural sciences and Engineering Science, engineering sciences in order to achieve the application of organisms and parts thereof for products and services. Specialists ...
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 Health technology, medical technology that aims to produce a therapeutic effect through the manipulation of gene expression or through altering the biological properties of living cells. The first attempt at modifying human DNA ...
and
stem cells In multicellular organisms, stem cells are undifferentiated or partially differentiated cells that can change into various types of cells and proliferate indefinitely to produce more of the same stem cell. They are the earliest type of cell ...
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 ...
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 dr ...
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 subject research, human participants designed to answer specific questions about biomedical or behavioral interventions, including new treatments (such as novel v ...
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 resu ...
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 type of breathing apparatus, a class 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 breathi ...
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 chief executive or managing director, is the top-ranking corporate officer charged with the management of an organization, usually a company or a nonprofit organization. CEOs find roles in variou ...
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 (PLM) is an integrated community, health management, and real-world data platform. The platform currently has over 830,000 members who are dealing with more than 2,900 conditions, such as ALS, MS, and epilepsy. Data generated by p ...
. 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 ...
. 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 Prizes () are 23 annual awards given by Columbia University in New York City for achievements in the United States in "journalism, arts and letters". They were established in 1917 by the will of Joseph Pulitzer, who had made his fo ...
-winning author
Jonathan Weiner Jonathan Weiner (born November 26, 1953) is an American writer of nonfiction 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 magazine featuring journalism, commentary, criticism, essays, fiction, satire, cartoons, and poetry. It was founded on February 21, 1925, by Harold Ross and his wife Jane Grant, a reporter for ''The New York T ...
,
Wall Street Journal ''The Wall Street Journal'' (''WSJ''), also referred to simply as the ''Journal,'' is an American newspaper based in New York City. The newspaper provides extensive coverage of news, especially business and finance. It operates on a subscriptio ...
,
New York Times Magazine ''The New York Times Magazine'' is an American Sunday magazine 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. The magazin ...
,
60 Minutes II ''60 Minutes II'' (also known as ''60 Minutes Wednesday'' and ''60 Minutes'') is an American weekly primetime news magazine television program that was intended to replicate the "signature style, journalistic quality and integrity" of the origin ...
,
New England Journal of Medicine ''The New England Journal of Medicine'' (''NEJM'') is a weekly medical journal published by the Massachusetts Medical Society. Founded in 1812, the journal is among the most prestigious peer-reviewed medical journals. Its 2023 impact factor was ...
, and
the Economist ''The Economist'' is a British newspaper published weekly in printed magazine format and daily on Electronic publishing, digital platforms. It publishes stories on topics that include economics, business, geopolitics, technology and culture. M ...
. 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 is an annual film festival organized by the Sundance Institute. It is the largest independent film festival in the United States, with 423,234 combined in-person and online viewership in 2023. The festival has acted ...
. In October 2009, Heywood gave a talk at TEDMED on his brother's condition and how it inspired him to found
PatientsLikeMe PatientsLikeMe (PLM) is an integrated community, health management, and real-world data platform. The platform currently has over 830,000 members who are dealing with more than 2,900 conditions, such as ALS, MS, and epilepsy. Data generated by p ...
.


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 *
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