Jamie Heywood

Last updated
Jamie Heywood
Born
James Heywood

(1966-10-04) October 4, 1966 (age 57)
London, England
Alma mater Massachusetts Institute of Technology
Known for PatientsLikeMe
ALS Therapy Development Institute

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]

Contents

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 His Brother's Keeper: A Story from the Edge of Medicine . [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]

Related Research Articles

Antisense therapy is a form of treatment that uses antisense oligonucleotides (ASOs) to target messenger RNA (mRNA). ASOs are capable of altering mRNA expression through a variety of mechanisms, including ribonuclease H mediated decay of the pre-mRNA, direct steric blockage, and exon content modulation through splicing site binding on pre-mRNA. Several ASOs have been approved in the United States, the European Union, and elsewhere.

Primary lateral sclerosis (PLS) is a very rare neuromuscular disease characterized by progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases. Motor neuron diseases develop when the nerve cells that control voluntary muscle movement degenerate and die, causing weakness in the muscles they control.

<i>So Much So Fast</i> 2006 American film

So Much So Fast is a documentary film written and directed by Academy Award nominees Steven Ascher and Jeanne Jordan. It premiered in competition at the 2006 Sundance Film Festival, and won the Audience Award at the Boston Independent Film Festival.

<span class="mw-page-title-main">Eva Feldman</span> American neurologist

Eva Lucille Feldman is an American physician-scientist who is a leading authority on neurodegenerative disease. She serves as the Russell N. DeJong Professor of Neurology at the University of Michigan, as well as Director of the NeuroNetwork for Emerging Therapies and ALS Center of Excellence at Michigan Medicine. She was also named the James W. Albers Distinguished University Professor of Neurology.

Mecasermin rinfabate, also known as rhIGF-1/rhIGFBP-3, is a drug consisting of recombinant human insulin-like growth factor 1 (IGF-1) and recombinant human insulin-like growth factor binding protein-3 (IGFBP-3) which is used for the treatment of amyotrophic lateral sclerosis.

<span class="mw-page-title-main">ALS Therapy Development Institute</span>

The ALS Therapy Development Institute 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 development program centered on ALS.

<span class="mw-page-title-main">ALS Association</span>

The ALS Association is an American nonprofit organization that funds global amyotrophic lateral sclerosis (ALS) research, provides care services and programs to people affected by ALS through its nationwide network of clinical care centers, and works with ALS advocates around the country for state and federal policies that serve people living with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

<span class="mw-page-title-main">SOD1</span> Protein-coding gene in the species Homo sapiens

Superoxide dismutase [Cu-Zn] also known as superoxide dismutase 1 or hSod1 is an enzyme that in humans is encoded by the SOD1 gene, located on chromosome 21. SOD1 is one of three human superoxide dismutases. It is implicated in apoptosis, familial amyotrophic lateral sclerosis and Parkinson's disease.

Augustine L. Nieto II was the founder and chief executive of Life Fitness, as well as the chairman of Augie's Quest to Cure ALS, and the ALS Therapy Development Institute. He and his wife, Lynne, lived in Corona Del Mar, California, and had four children and eight grandchildren.

<span class="mw-page-title-main">PatientsLikeMe</span> Health management social networking website

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 patients themselves are collected and quantified with the goal of providing an environment for peer support and learning. These data capture the influences of different lifestyle choices, socio-demographics, conditions and treatments on a person's health.

<span class="mw-page-title-main">ALS</span> Rare neurodegenerative disease

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease in the United States, is a rare, terminal neurodegenerative disorder that results in the progressive loss of both upper and lower motor neurons that normally control voluntary muscle contraction. ALS is the most common form of the motor neuron diseases. ALS often presents in its early stages with gradual muscle stiffness, twitches, weakness, and wasting. Motor neuron loss typically continues until the abilities to eat, speak, move, and, lastly, breathe are all lost. While only 15% of people with ALS also fully develop frontotemporal dementia, an estimated 50% face at least some minor difficulties with thinking and behavior. Depending on which of the aforementioned symptoms develops first, ALS is classified as limb-onset or bulbar-onset.

<span class="mw-page-title-main">Sean F. Scott</span>

Sean Forrester Scott was a self-educated disease activist and researcher, filmmaker, innovator, entrepreneur and until the time of his death, the president of the ALS Therapy Development Institute, the world's largest amyotrophic lateral sclerosis research center. Scott himself was diagnosed with ALS in 2008 at the age of 38.

<span class="mw-page-title-main">Olesoxime</span> Chemical compound

Olesoxime (TRO19622) is an experimental drug formerly under development by the now-defunct French company Trophos as a treatment for a range of neuromuscular disorders. It has a cholesterol-like structure and belongs to the cholesterol-oxime family of mitochondrial pore modulators.

<span class="mw-page-title-main">Helixmith</span> South Korean biotechnology company

Helixmith Co. LTD. is a biotechnology company located in Seoul, South Korea with US presence in San Diego. The company has an extensive gene therapy pipeline, including a non-viral plasmid DNA program for neuromuscular and ischemic disease, a CAR-T program targeting several different types of solid tumors, and an AAV vector program targeting neuromuscular diseases. Helixmith’s lead gene is Engensis (VM202), currently in phase III diabetic peripheral neuropathy (DPN) in the US. Engensis (VM202) is a plasmid DNA designed to simultaneously express two isoforms of hepatocyte growth factor (HGF), HGF 728 and HGF 723. In addition to DPN, Engensis is also being studied in diabetic foot ulcers (DFU), amyotrophic lateral sclerosis (ALS), coronary artery disease (CAD), claudication, and Charcot-Marie-Tooth disease (CMT).

<span class="mw-page-title-main">Les Turner ALS Foundation</span>

The Les Turner ALS Foundation is a non-profit organization based in Chicago that provides amyotrophic lateral sclerosis (ALS) patient services; supports events, education and awareness about ALS; and funds ALS research. Since it was founded, it has raised over $64 million.

Research on amyotrophic lateral sclerosis (ALS) has focused on animal models of the disease, its mechanisms, ways to diagnose and track it, and treatments.

John B. Heywood is a British mechanical engineer known for his work on automotive engine research, for authoring a number of field-defining textbooks on the internal combustion engine, and as the director of the Sloan Automotive Lab at the Massachusetts Institute of Technology (MIT).

Merit Cudkowicz is an American neurologist and neuroscientist who studies amyotrophic lateral sclerosis (ALS). Cudkowicz is Julieanne Dorn Professor of Neurology at Harvard Medical School, director of the ALS clinic and the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH), and chair of the Department of Neurology at MGH. Cudkowicz has led several large-scale collaborations and clinical trials to test novel treatments for ALS and as of 2020, researching ways to detect early biomarkers of ALS to improve diagnosis.

<span class="mw-page-title-main">Tofersen</span> Medication

Tofersen, sold under the brand name Qalsody, is a medication used for the treatment of amyotrophic lateral sclerosis (ALS). Tofersen is an antisense oligonucleotide that targets the production of superoxide dismutase 1, an enzyme whose mutant form is commonly associated with ALS. It is administered as an intrathecal injection.

The New York Stem Cell Foundation, or NYSCF, is an American non-profit research institute focused on stem cell research, technology development, and funding researchers. Headquartered on the far west side of Manhattan, New York, NYSCF employs 114 scientists, technicians, engineers, and administrative and other staff, in addition to funding early career investigators and postdoctoral fellows. Since its inception, NYSCF has raised and invested more than $400 million for stem cell research.

References

  1. ↑ Our team
  2. ↑ "Archived copy". Archived from the original on 2004-11-08. Retrieved 2008-03-21.{{cite web}}: CS1 maint: archived copy as title (link)
  3. ↑ Janson CG, Ramesh TM, During MJ, Leone P, Heywood J (2001). "Human intrathecal transplantation of peripheral blood stem cells in amyotrophic lateral sclerosis". J Hematother Stem Cell Res. 10 (6): 913–915. doi:10.1089/152581601317211015. PMID   11798518.
  4. ↑ Clark JE, Brennan A, Ramesh TM, Heywood JA (2002). "Novel trends in orphan market drug discovery: amyotrophic lateral sclerosis as a case study". Front Biosci. 7 (1–3): c83–96. doi: 10.2741/clark1 . PMID   12133810.
  5. ↑ 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 (2008). "Design, power, and interpretation of studies in the standard murine model of ALS". Amyotrophic Lateral Sclerosis. 9 (1): 4–15. doi:10.1080/17482960701856300. PMID   18273714. S2CID   21962544.
  6. ↑ "Technology Review: Work That Matters". www.technologyreview.com. Archived from the original on 2007-11-30. Retrieved 2021-04-07.
  7. ↑ "ALS Therapy Development Institute Announces - News, Search Jobs, Events". www.biospace.com. 2007-08-23. Archived from the original on 2011-07-16. Retrieved 2021-04-07.
  8. ↑ "15 companies that will change the world - PatientsLikeMe (7) - Business 2.0". money.cnn.com. Retrieved 2021-04-07.
  9. ↑ "His Brother's Keeper: One Family's Journey to the Edge of Medicine (P.S.) Paperback – Bargain Price, June 14, 2005". www.amazon.com. Retrieved 2021-04-07.
  10. ↑ Weiner, Jonathan. "Curing the Incurable". The New Yorker. Retrieved 2021-04-07.
  11. ↑ Goetz, Thomas (2008-03-23). "Practicing Patients". The New York Times. ISSN   0362-4331 . Retrieved 2021-04-07.
  12. ↑ "Saving Stephen Heywood". www.cbsnews.com. 2000-09-29. Archived from the original on 2002-06-01. Retrieved 2021-04-07.
  13. ↑ Rowland, Lewis P. (2004-05-06). "Book Review". New England Journal of Medicine. 350 (19): 2012–2013. doi:10.1056/NEJM200405063501923. ISSN   0028-4793.
  14. ↑ "The big idea my brother inspired". TEDMED 2009. TED.com. October 2009.
This page is based on this Wikipedia article
Text is available under the CC BY-SA 4.0 license; additional terms may apply.
Images, videos and audio are available under their respective licenses.