Open Medicine Foundation Explained

Open Medicine Foundation
Logo Alt:The text "Open Medicine Foundation" written in teal and blue. Below it is written the word "HOPE" with the O replaced by a blue ribbon, and the words, "Leading Research. Delivering Hope."
Headquarters:Agoura Hills, California
Leader Title:President
Leader Name:Linda Tannenbaum

The Open Medicine Foundation (OMF) is a US-based charity that funds research into the illnesses myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, post-treatment Lyme disease syndrome, and long COVID.[1]

History

The OMF was founded in 2012 by Linda Tannenbaum after her daughter became ill with ME/CFS in 2006.[2] [3] Tannenbaum has said, "For a long time, the medical world didn’t feel ME/CFS was a real disease," and advocates for increased federal research funding.

In 2018, the OMF received a donation of $5 million in Bitcoin from the anonymous founder of the Pineapple Fund.

Activities

The OMF provides funding for seven collaborative research centers, including one center at Stanford, one at Harvard, one at the University of Montreal, as well as locations in Australia and Sweden. Research is mainly funded by patients and families.[4]

Research has included investigations into T-cells and immunological genes, analyses of muscle and other tissues, a study on families of patients, an attempt to develop a nanoneedle-based blood test for ME/CFS, studies on the density and deformability of blood cells compared to healthy controls, work on mitochondrial function, and investigation of potential altered metabolism in people with ME/CFS.[5] One project involved a whole-genome mapping of 20 severe ME/CFS patients.[6] Plans to fund multicenter trials of treatments have also been announced.[7]

Along with the Bateman Horne Center, the OMF maintains the Medical Education Resource Center, a website to educate doctors on diagnosis and treatment of complex chronic illnesses. OMF maintains a patient registry (StudyME) to help researcher find participants for their studies.[8]

Leadership

Linda Tannenbaum is CEO and president, while geneticist Ron Davis heads the scientific advisory board.[9]

References

  1. Web site: Kelly . Jemima . 2 February 2018 . Anonymous Bitcoin Philanthropist Donates $5 Million to Medicine Foundation . 7 September 2022 . U.S. News.
  2. Web site: Matthiessen . Connie . 2017-10-12 . 'Unrest' Film Sheds Light on Misunderstood Disease Impacting Local Lives . 2022-09-08 . Dana Point Times . en-US.
  3. Web site: 6 July 2021 . Open Medicine Foundation Press Kit . 7 September 2021 . Open Medicine Foundation.
  4. Web site: "Our Next National Health Disaster." Boosting Research into Long COVID and Chronic Fatigue . 2022-09-08 . Inside Philanthropy . 25 August 2022 . en-US.
  5. Web site: Simon-Gersuk . Marilyn . 2018-05-31 . Read about the Ongoing Science at OMF . 2022-09-08 .
    1. MEAction Network
    . en-US.
  6. Maxmen . Amy . 2018-01-03 . A reboot for chronic fatigue syndrome research . Nature . en . 553 . 7686 . 14–17 . 10.1038/d41586-017-08965-0. 2018Natur.553...14M .
  7. Web site: 2018-05-23 . Open Medicine Foundation Commits $1.8M to Research ME/CFS at Harvard Hospitals . 2022-09-08 . Genomeweb . en.
  8. Web site: StudyME . 2024-01-27 . Open Medicine Foundation . en-US.
  9. Web site: Archibald . Timothy . 16 May 2016 . The puzzle solver . 2022-09-08 . Stanford Medicine .