James Heywood

James Heywood (born October 4, 1966 in London England) is an American MIT mechanical engineer who founded with his family and friend Robert Bonazoli the ALS Therapy Development Institute(ALS TDI) when his younger brother Stephen Heywood was diagnosed with ALS in December 1998.

ALS Therapy Development Institute

Conceived while Jamie 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. [http://www.extrahandsforals.org/joalsfnews/archives/2002_04.html] 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. cite journal |author=Janson CG, Ramesh TM, During MJ, Leone P, Heywood J. |title=Human intrathecal transplantation of peripheral blood stem cells in amyotrophic lateral sclerosis. |journal=J Hematother Stem Cell Res. |volume=10 |issue=6 |pages=913–915 |year=2001 |pmid=11798518 |doi=10.1089/152581601317211015] ALS TDI then pioneered a novel high-throughput in-vivo validation program cite journal |author=Clark JE, Brennan A, Ramesh TM, Heywood JA.|title=Novel trends in orphan market drug discovery: amyotrophic lateral sclerosis as a case study. |journal=Front Biosci |volume=1 |issue=7 |pages=c83–96 |year=2002 |pmid=12133810|doi=10.2741/clark1] that tested more treatments in preclinical studies than all other labs combined and lead to two drugs being tested in clinical trials. The culmination of this work is a paper published in the journal "Amyotrophic Lateral Sclerosis"cite journal |author=Scott S, Kranz JE, Cole J, Lincecum JM, Thompson K, Kelly N, Bostrom A, Theodoss J, Al-Nakhala BM, Vieira FG, Ramasubbu J, Heywood JA. |title=Design, power, and interpretation of studies in the standard murine model of ALS. |journal=Amyotrophic Lateral Sclerosis |volume=9 |issue=1 |pages=4–15 |year=2008 |pmid=18273714 |doi=10.1080/17482960701856300] 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 lead to clinical trials that ultimately failed in humans.

Stephen Heywood passed away 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. [http://www.technologyreview.com/article/19560/] [http://www.rideforlife.com/news/passages/stephen_heywood_37_dies_founder_of_alstdf.html] In August 2007 after serving as ALS TDI’s CEO for nine years and having raised $50m in funding, Jamie stepped down and joined the Institute’s board of directors. [http://www.biospace.com/news_story.aspx?NewsEntityId=67457] 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.com

In 2005, Jamie joined his youngest brother Ben Heywood and longtime friend Jeff Cole to found PatientsLikeMe. PatientsLikeMe gives its members easy to use clinically validated outcome management tools so that they can share all of their disease-related medical information. 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.

Currently Jamie 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 / media

Heywood has been profiled by the Pulitzer Prize winning author Jonathan Weiner, in the biography "His Brother's Keeper". [http://www.amazon.com/dp/B000GH2YRE] He has been profiled in The New Yorker, [http://www.newyorker.com/archive/2000/02/07/2000_02_07_064_TNY_LIBRY_000020155] Wall Street Journal, New York Times Magazine, [http://www.nytimes.com/2008/03/23/magazine/23patients-t.html] 60 Minutes II, [http://www.cbsnews.com/stories/2000/04/17/60II/main185037.shtml] New England Journal of Medicine, [http://content.nejm.org/cgi/content/extract/350/19/2012] 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.

References

External links

* [http://www.als.net 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.
* [http://www.patientslikeme.com PatientsLikeMe] is an online community for people affected by life-changing illnesses, including ALS
* [http://www.pbs.org/wgbh/pages/frontline/somuchsofast/ PBS Frontline] 's website about James Heywood and his brother Stephen]