The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

OMF, Ron Davis and James "DNA" Watson launch END ME/CFS Project

Discussion in 'Fundraising' started by Sasha, Oct 7, 2014.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Yes, James D Watson as in "Crick and Watson" as in "co-discovered the structure of DNA"!

    http://www.openmedicinefoundation.org/the-end-mecfs-project/


    All very exciting - check out their site.

    All these top-notch scientists jumping onto the ME research bus - Ian Lipkin, Ron Davis, now James Watson! It just gets better and better. With connections like they can pull in, we're getting more and more quality scientists on our case.

    This is great!
     
    leela, SDSue, MeSci and 26 others like this.
  2. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,618
    UK
    only taken a quick look but looks brilliant
     
    MeSci, DanME, merylg and 3 others like this.
  3. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
  4. Gemini

    Gemini Senior Member

    Messages:
    654
    Likes:
    1,177
    leela, MeSci, Battery Muncher and 9 others like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Last edited by a moderator: Oct 7, 2014
    MeSci, NK17 and Gingergrrl like this.
  6. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,179
    Wow! :woot::jaw-drop:

    You can almost feel the winds of change blowing. Things improving on multiple fronts for ME these days.
     
    SDSue, MeSci, Battery Muncher and 8 others like this.
  7. Gemini

    Gemini Senior Member

    Messages:
    654
    Likes:
    1,177
    Multi-disciplinary collaboration
    to END ME/CFS


    [​IMG]
    THE OMF END ME/CFS PROJECT
    Open Medicine Foundation (OMF) and top experts under the guidance of world-renowned geneticist Ronald W. Davis, PhD are launching a bold new project of collaborative research. The ultimate goal is to unlock the mystery of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

    “I really enjoy working on problems that others think are unsolvable, and I’ve been finding, to my surprise, that the older I get, the easier it is to take on those problems”, says Ronald W. Davis, PhD, OMF Scientific Advisory Board Director.
    OMF’s new END ME/CFS Project will create a large consortium of scientists and clinicians with expertise in ME/CFS and top-notch experts in relevant scientific fields and will also include world-class scientists not currently working on this disease.

    It will be modeled after two former success stories:
    - The Human Genome Project, launched by James D. Watson, PhD (who has joined our Scientific Advisory Board).
    - The Consortium on Inflammation and Host Response to Injury in Humans (www.gluegrant.org), led by Ronald G. Tompkins, MD, ScD (who has also joined).

    The project will find grants and funding, and determine the most effective course of research. The goal is to understand the disease at a molecular level, finding diagnostic markers, effective treatments, cure and prevention. Basic research will be conducted in the best scientific laboratories. ME/CFS clinicians will provide their intimate knowledge of the disease and conduct any clinical trials. We will work until answers are found.

    World-renowned scientists
    The Open Medicine Foundation is honored to announce that Dr. Ronald W. Davis will join the OMF as its new ME/CFS Scientific Advisory Board Director. Dr. Davis is Professor of Biochemistry and Genetics at Stanford University and Director of the Stanford Genome Technology Center. The originator of numerous innovations in genetics technology, molecular instrumentation, Dr. Davis is known as one of the “fathers of the modern era of human genetics”.
    Dr. Davis was a key scientist in the Human Genome Project, perhaps the most groundbreaking project in medicine in the last 15 years. His pioneering and collaborative work has gained Dr. Davis the respect of scientists and clinicians worldwide.
    Other remarkable scientists that will join Dr. Davis on the Scientific Advisory Board include (see bios below):
    • Mario Capecchi, PhD - Nobel Prize Laureate - currently working on molecular genetic causes underlying human disorders involving the immune system and the brain;
    • Mark M. Davis, PhD - renowned immunologist;
    • H. Craig Heller, PhD - sports fatigue expert with broad knowledge of physiology;
    • Andreas M. Kogelnik, MD, PhD prominent ME/CFS clinician-scientist;
    • Baldomero M. Olivera, PhD - innovative neurobiologist;
    • Ronald G. Tompkins, MD, ScD - prestigious trauma physician;
    • James D. Watson, PhD - Nobel Prize Laureate for his determination of the structure of DNA

    A few additional top scientists are yet to be recruited. Together, they will recruit a large consortium of leading researchers and clinicians including many already involved in ME/CFS.
    This collaboration will bring in expertise in a wide range of body systems and a diversity of disciplines including medicine, genetics, biochemistry, immunology, infectious disease, neurophysiology, bioinformatics, and statistics.

    Producing a breakthrough
    The END ME/CFS Project was founded on the idea that a comprehensive, interdisciplinary effort is needed to produce breakthroughs in our understanding of ME/CFS and neuro-immune diseases. The OMF’s goal is to connect the best experts, from inside and outside the field, through openness and information sharing.
    Linda Tannenbaum, Executive Director of the OMF, and Ronald W. Davis, PhD also have a personal goal to find answers as quickly as possible as they have a daughter and a son, respectively, suffering from ME/CFS. Personal dedication can be a powerful force for making breakthroughs in difficult to understand diseases.
    The Scientific Advisory Board under the guidance of Dr. Davis will lead the consortium in a collaborative manner to move research as fast as possible in the least expensive and most systematic manner.

    Five million dollars
    OMF is setting an initial minimum goal of $5 million per year for the END ME/CFS project. To join in this campaign to End ME/CFS and Donate to the Open Medicine Foundation, please go today to www.openmedicinefoundation.org/ways-of-giving/donate or contact us at donate@openmedicinefoundation.org. Ask your friends, your family and your peers to donate to this ground-breaking project that will be a catalyst to the understanding of all Neuro-Immune Diseases.

    Be part of this effort to unlock the mystery and find a cure, and share the hope of millions of patients worldwide.

    CDC states up to 4 million affected by ME/CFS in the US alone
    Over 8 million affected by ME/CFS world-wide
    An estimated 1 in 500 school-aged children are at home due to ME/CFS
    Estimated 1 in 300 people are affected
    There is no lab tests or biomarkers for ME/CFS
    Many patients are bed-ridden or home-bound
    Many patients cannot work or live normal lives
    No clear diagnosis.
    No effective treatments or cure.

    ---------------------------------------------------------------------------------
    Bios of our esteemed ME/CFS Scientific Advisory Board
    [​IMG]Ronald W. Davis, PhD: Dr. Davis’s history of interdisciplinary work, technology development, and attacking previously unsolvable biological problems (both in genetics and traumatology), makes him the ideal scientist to lead a collaborative consortium to solve the mystery of ME/CFS.
    Dr. Davis is Professor of Biochemistry and Genetics at Stanford University School of Medicine and he is the Director of the Stanford Genome Technology Center. Dr. Davis holds a PhD in Chemistry from Caltech. He is a member of the National Academy of Sciences.

    http://en.wikipedia.org/wiki/Ronald_W._Davis
    http://med.stanford.edu/sgtc/general/RonDavis_profile.html

    capecchi_headshot-(2).jpg
    Mario Capecchi, PhD
    : Dr. Capecchi is an expert on human genetics, with a focus on the interaction of immune cells in the brain. His current research involves investigating the molecular genetic causes underlying human disorders involving the immune system and the brain. His expertise and insights in this area will be essential in understanding ME/CFS.
    Dr. Capechhi is a Nobel Laureate in Physiology or Medicine. He is Distinguished Professor of Human Genetics at University of Utah School of Medicine. Dr. Capecchi holds a PhD in Biophysics from Harvard University. He is a member of the National Academy of Sciences.
    http://www.hhmi.org/scientists/mario-r-capecchi
    http://capecchi.genetics.utah.edu/capecchi.html
    [​IMG]Mark M. Davis, PhD : As a world famous immunologist, Dr. Davis’ focus is to develop a broad understanding of the human immune system to gain more coordinated information about what a healthy immune system looks like. The immune system is clearly involved in ME/CFS and Dr. Davis will be invaluable on the Advisory Board.

    Dr. Davis is Professor of Microbiology and Immunology at Stanford University School of Medicine and Director of the Stanford Institute for Immunity, Transplantation and Infection. Dr. Davis holds a PhD in Molecular Biology from Caltech. He is a member of the National Academy of Sciences.

    https://med.stanford.edu/profiles/mark-davis?tab=bio
    http://www.hhmi.org/scientists/mark-m-davis

    [​IMG]H. Craig Heller, PhD : Dr. Heller has a wide breadth of knowledge of biology. He conducts extensive research in exercise physiology, examining fatigue in athletes. Dr. Heller has developed an instrument that allows increased exercise without fatigue. Having someone who understands fatigue and the normal response to exercise is essential for understanding how it goes wrong in ME/CFS.
    Dr. Heller is Professor of Biology at Stanford University. He holds a PhD in Biology from Yale University and is a physiologist and biologist at Stanford.
    https://med.stanford.edu/profiles/h-craig-heller?tab=bio
    http://en.wikipedia.org/wiki/Craig_Heller

    [​IMG]Andreas M. Kogelnik, MD, PhD: As an infectious disease specialist, Dr. Kogelnik is centrally involved with the bioinformatics and genomic revolution in medicine and is committed to the study of and treatment of ME/CFS and other chronic illnesses. His approach to treatment is based upon scientific evidence and he has led the charge on collecting large scale data and samples for ME/CFS research.
    Dr. Kogelnik is a physician-scientist and Founder and Director of the Open Medicine Institute. He holds an MD from Emory University and a PhD in Bioengineering from Georgia Tech. He completed his residency in Internal Medicine and a Fellowship in Infectious Diseases at Stanford.
    http://openmedicineinstitute.org/about/management/
    http://www.cortjohnson.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/dr-andreas-kogelnik-phd-m-d/
    [​IMG]Baldomero M. Olivera, PhD : Through his studies in neurobiology and cone snails Dr. Olivera has been able to develop a number of pain drugs, one of which is a thousand times more effective than morphine. Dr. Olivera is an expert on conotoxins that can modulate nerve function. He believes the future of neuroscience depends on collaboration across disciplines. Dr. Olivera will add to the Advisory Board his expertise in neurobiology and developing drugs for intervening in neurological processes, as well as his extraordinary creativity and thoughtful approach to scientific problems.
    Dr. Olivera is a Distinguished Professor of Biology at the University of Utah and is a lead scientist in the research of cone snail toxins. He holds a PhD in biophysical chemistry from Caltech. He is a member of the National Academy of Sciences.
    http://neuroscience.med.utah.edu/Faculty/Olivera.html
    http://www.hhmi.org/scientists/baldomero-m-olivera
    [​IMG]Ronald G. Tompkins, MD, ScD: Dr. Tompkins has a very broad knowledge of trauma and metabolism. He ran the large NIH-funded Glue Grant for Inflammation and Host Response to injury in Humans, a large-scale collaborative research program that generated and analyzed likely the largest data set ever collected on humans. There seems to be a relationship between trauma and ME/CFS, possibly being triggered by or putting the body into a constant state of trauma. Dr. Tompkins is skilled at getting a diverse group of scientists and doctors to work together and collaborate. Having him on the Advisory Board is instrumental to successfully managing such a big project.
    Dr. Tompkins is a Professor of Surgery at the Harvard Medical School. He is also Chief of Trauma, Burns and Surgical Critical Care Service at the Massachusetts General Hospital and Chief of Staff at the Shriners Hospitals for Children in Boston. Dr. Tompkins is a leading trauma and burn physician and trauma specialist at the Massachusetts General Hospital.
    https://ccib.mgh.harvard.edu/tompkins/pi_bio
    http://cem.sbi.org/web/people-tompkins.htm

    [​IMG]James D. Watson, PhD : Dr. Watson served as Director of the Human Genome Project from 1990 till 1992. Under his leadership the project was highly successful and came in under budget and ahead of schedule. Dr. Watson has written three widely used textbooks. He is a leader in complex scientific problem solving, and has a track record of successful fund raising in both public and private sectors. Dr. Watson has a great ability for seeing the big picture and has the knowledge, connections, and experience to help set up an effective project.
    Dr. Watson is Nobel Laureate in Physiology or Medicine. He is Chancellor of Cold Spring Harbor Laboratories. Dr. Watson holds a PhD in Zoology from Indiana University. He is a member of the National Academy of Sciences.
    http://www.cshl.edu/gradschool/james-d-watson.html
    http://www.nobelprize.org/nobel_prizes/medicine/laureates/1962/watson-bio.html

    Open Medicine Foundation
    Tax ID: 26-4712664
    Collaborating to Fast Track Answers
    Our Mission:
    • To communicate, engage and inform the patient community.
    • To fundraise for neuro-immune disease research.
    • To help drive & support scientific meetings for continued global collaboration.
    A Word from our Executive Director:
    The END ME/CFS Project is the best chance in the history of this disease and all neuro-immune diseases to find answers that will translate to helping those that continue to suffer. This has to happen and it has to happen now. We are determined to find answers.
    To a healthy future for all,
    Linda Tannenbaum
    Executive Director
    OpenMedicine Foundation
    www.openmedicinefoundation.org

    Note to moderators: can you merge with other thread on this topic?
     
    Last edited by a moderator: Oct 7, 2014
  8. Helen

    Helen Senior Member

    Messages:
    2,072
    Likes:
    3,200
    I am very happy to read about this new research group and their aims. Another group of brilliant researchers has come to our help. I would like to thank @Linda Tannenbaum for all your work to prepare for this.

    Quote: Linda Tannenbaum, Executive Director of the OMF, and Ronald W. Davis, PhD also have a personal goal to find answers as quickly as possible as they have a daughter and a son, respectively, suffering from ME/CFS. Personal dedication can be a powerful force for making breakthroughs in difficult to understand diseases.
     
    MeSci, ukxmrv, justy and 8 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,561
    Likes:
    24,688
    USA
    Wow, this is incredible and thank you to @Sasha and @Gemini for posting this. I feel like the Open Medicine Institute & Foundation are at the cutting edge of solving ME/CFS even though it still may be decades away. I can't believe they got James Watson to join their research, that is amazing!

    I am really happy and proud to be a patient at OMI and the two times I have been there in person, it was so clear to me how dedicated and hard they are all working. The moment you walk through the door, you are completely understood and do not have to explain to a new doctor what ME/CFS is hoping that they might believe you that it exists.
     
    MeSci, PennyIA, DanME and 5 others like this.
  10. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,517
    This is the DREAM TEAM!!!
    This thread with such important and big news should be on PR's front page ;)
    If I have to trust anybody in the ME field to finally guide us out of the long dark night, is surely Ron Davis and the team assembled around him by the OMF.
     
    Last edited: Oct 7, 2014
  11. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    There's a thing here where (US?) people can get a free cut of money to the OMF every time they shop online with loads of major stores:

    http://www.igive.com/welcome/lptest/wr31a.cfm?c=65413&p=19992&jltest=1

    A few weeks ago I signed up to a similar thing in the UK (EasyGiving) and I've already raised £20 for a UK ME Research charity at no cost to myself.

    And, of course, you can always just give OMF your cash! :cool:
     
  12. Sparrow

    Sparrow Senior Member

    Messages:
    691
    Likes:
    858
    Canada
    Donated. Thank you for sharing this.
     
    rosie26, Kati, Sasha and 1 other person like this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    justy, DanME, NK17 and 1 other person like this.
  14. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    Can someone clarify the role of the Scientific Advisory Board please?
    Do members of it actually conduct research or just advise on research?
     
  15. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    I think you're best off addressing those questions directly to the OMF - there are contact details on their site and they've put the project on their FB page so a quick message there should get their attention:

    https://www.facebook.com/OpenMedicineFoundation/posts/588377011266724
     
  16. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,114
    northern Maine
    A minimum of five million dollars a year - every year! Isn't that more than CDC/NIH spends on this illness?

    As usual, they are leading from behind. Actual researchers are finding useful answers while bureaucrats are arguing over how many disease definitions can fit on the head of a pin.
     
  17. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Little Bluestem, Iquitos and Gemini like this.
  18. lnester7

    lnester7 Seven

    Messages:
    2,451
    Likes:
    3,548
    USA
    I am excited and impress BUT I would love to understand how this came about. Lately I am just not clear on intentions from the different groups, their motivations, who is associated with who. Can we trust this group or is it Pharma or Government behind it????
     
  19. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    No pharma or government (chance would be a fine thing) involvement as far as I'm aware.

    The OMF is the Open Medicine Institute's fundraising arm. The OMI was set up by Dr Andreas Kogelnik (a well-known CFS specialist) and held a two-day international conference a couple of years ago of ME/CFS clinicians and researchers to come up with an agreed list of priority biomedical research projects (the OMI-MERIT initiative). Some of those projects already have funding (obtained entirely by donations AFAIK) and are underway.

    Their interest is very much in biomedical research. If pharma were involved, I think we'd be seeing big money for drug-specific trials and pharma providing those drugs, which isn't happening. If the government were involved, it would be via the NIH or similar and I think we'd be hearing about those grants. I'd love for the NIH to get involved and actually fund some worthwhile studies. We've been begging them to do exactly that for years.

    As far as I'm concerned this is a solid group, includes key players (Ron Davis and Linda Tannenbaum) who have children with severe ME, and the involvement of serious biomedical researchers.

    Couldn't ask for better!
     
    MeSci, Iquitos, justy and 9 others like this.
  20. DanME

    DanME Senior Member

    Messages:
    286
    Likes:
    1,301
    WOW!!

    I am really impressed and happy about this! So many world class scientist on the same board and the same track. I cannot believe they got Watson. If he is going to promote serious biomedical research for ME, we could get very big funding!

    :hug: :thumbsup: :woot: :nerd::redface:

    Good news. I am going to donate money immediately!
     
    MeSci, Battery Muncher, Kati and 5 others like this.

See more popular forum discussions.

Share This Page