The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

OMF Newsletter October 2016+$260,000 ($160k+100k) donations! Plus $30,000 fundraised!

Discussion in 'Latest ME/CFS Research' started by Ben Howell, Oct 10, 2016.

  1. Ben Howell

    Ben Howell OMF Correspondent

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    Hi Guys,

    Here is the latest newsletter hot off the press, with some incredible donation related news, aswell as awards for OMF as a charity and lots on Millions Missing with Dr Davis, Linda Tannenbaum, Janet Dafoe and Ashley Dafoe, and others!

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    OMF News October 2016
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    $260,000 for ME/CFS Research

    We are thrilled to announce that we just received two very generous gifts totaling $260,000 ($160K and $100K) from two extremely dedicated families adding to our tremendous strategic donor alliance working together for a cure.
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    These generous donations allow us to expand the OMF End ME/CFS project with novel and systematic approaches leading towards a better understanding of this devastating disease and towards our top priority, to find effective treatments.

    We also thank all of our generous donors from 27 different countries that continue to keep us moving ahead to find a cure.

    OMF AWARDED TOP-RATED CHARITY
    FOR 2016


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    With your help we did it! OMF has been honored with one of the first Top-Rated Awards of 2016 from GreatNonprofits! Our supporters wrote wonderful reviews including statements like, "The Open Medicine Foundation has been for me a pillar of HOPE" and "They have kept me informed almost daily of discoveries and advancements being made through social media and by newsletters." Your reviews inspire us and inform the community of the value of our work. We appreciate all of your contributions and look forward to continuing to work together to help patients around the globe! Please feel free to add your review of OMF, too.

    NIH DIRECTOR FRANCIS COLLINS RESPONDS
    Due to exceptional outreach from advocates around the United States, 55 members of Congress signed a letter urging the National Institutes of Health (NIH) to increase funding for ME/CFS research. NIH currently spends approximately $2 per patient with ME/CFS compared to $255 per patient with multiple sclerosis and $2,482 per patient with HIV/AIDS.
    Janet Dafoe helped to bring the ME/CFS community together to work with Congresswoman Anna Eshoo and raised our voices. There was a loud outcry from patients to support this effort and we all felt it was a positive step forward. This week, Congresswoman Eshoo shared Director Francis Collins' response to the 55 Congressional members with Janet. We encourage the US patient community to continue pressuring NIH to step up to the plate and help ME/CFS patients with increasing funding!

    WE WERE THERE!
    OMF SPOKE UP AT #MILLIONSMISSING

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    OMF leaders Dr. Ron Davis, Linda Tannenbaum and Janet Dafoe, together with Ashley Davis, all took center stage at the Sept. 27th Millions Missing event in San Francisco, CA.

    During his speech, Dr. Davis gave a research update and shared that his team has a new nano-fabricated instrument that measures cellular properties in blood. They can now distinguish healthy blood from blood from a patient with ME/CFS. This may be used for an assay for testing drugs for ME/CFS treatment. If this proves to work, they will be able to test every drug that has ever been approved by the FDA for anything, because they have samples of every one of them in their freezer. The hope this engendered in those gathered was palpable.

    In her speech, Janet listed her heroes: her family, as well as doctors and scientists who have helped transform the field, and made pleas for transforming the CDC and NIH to "hero" status.

    She concluded by speaking directly to Francis Collins, Director of NIH, about the promises he has made directly to her husband, Ron Davis. She reminded him that he had told Ron that we would be pleased by NIH's new initiatives for funding research. She told him, "Francis, we aren't pleased yet!"

    Linda spoke about the need to move research forward to fast-track answers. Proudly, the day was live-streamed on our twitter feed. The speeches are now available on our YouTube channel.


    How Can YOU Make A Difference !?!

    People ask us all the time, how can I help? Sometimes they add, "but I don't have any money." We get it. Regardless of your financial means, you can personally help support OMF! We are one team working together for a common goal. Get involved today!

    Here are just a few ways you can get involved from anywhere in the world.
    1. "Like" our page on Facebook. [​IMG]
    Follow us on Twitter and Instagram. [​IMG] [​IMG]
    2. Become a Social Media Ambassador. Help us spread our messages through social media. Sharing messages, creating messages with our hashtags, getting the word out - helps to raise awarenss and increases fundraising. #EndMECFS #OMF
    Contact Marilyn for ideas and more information.
    3. Join TEAM OMF by hosting a Team OMF event - Have a bake sale at work or your place of worship. Host a cocktail party on your patio. Be creative, make it simple, and have fun! Invite your family, friends and colleagues to your Team OMF event, educate them about ME/CFS and ask them to make a donation. Everything you need to know about planning an event is at your finger tips.
    Every gift - large and small - helps move research forward.
    INTERNATIONAL ASSOCIATION CFS/ME BIENNIAL CONFERENCE

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    We are excited to share that Scientific Advisory Board Director, Dr. Ron Davis and member, Dr. David Bell, specialist in pediatric ME/CFS, will be at the IACFS conference together with Linda Tannenbaum, CEO and Marilyn Simon-Gersuk, Director of Communications and Development. Please stop by the table, introduce yourself, and get to know us.

    We look forward to reconnecting with old and meeting new friends.


    DUELING PIANOS: A NIGHT OUT FOR A CURE

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    OMF and NIDA friends and family celebrated a fantastic, fun evening of dueling pianos, dancing, singing and dinner to raise funds for ME/CFS research and education.

    This event, held in Los Angeles on Oct 6th, was generously underwritten by Deluxe, Dolby, Vision Media Management, Vista Group and NIDA so that 100% of all ticket sales and funds donated at the event went to support OMF's research and education programs.

    The evening netted over $30,000. Thank you to everyone who attended and to our local volunteers who helped to ensure everyone had a great time. We will definitely do this again next year. If you would like to host one of these fun events, contact us and we will help you plan one in your neighborhood!

    Add Your Voice to
    Friday Stories


    Friday Stories is your place to share
    your own personal story – patient, parent, child, or caregiver. Please share your personal journey as we work together to end ME/CFS and other chronic complex diseases.

    Your personal story helps others who are going through similar medical issues realize that they are not alone or forgotten while empowering you.
    Stories are reassuring and let people know it’s okay to talk about their illness and personal experience and to know that others are listening.

    Sharing your story is empowering and helpful for others to understand they are not alone.

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    Please submit your story. Check in to read others stories. Become a part of Friday Stories.


    OpenMedicine Foundation
    Tax ID: 26-4712664

    Our Mission

      • To support collaborative medical research to find effective treatments and diagnostic markers
      • To communicate, engage and inform the patient community.
      • To help drive & support scientific meetings for continued global collaboration.
    A Word from our CEO/President:

    With tremendous U.S. and International support, we are grateful to all of our study participants, donors, followers, bloggers and social media fans as well as our boards and volunteers that continue to help keep this ground-breaking research moving forward and communication flowing.

    We are all in this together as a community; #MEAction and their #MillionsMissing campaign was a huge success all around the world in 25 cities. Thank you to the #MEAction team and all the volunteers who made that happen.

    Thank you all for reading our newsletter and being a part of the solution.
    [​IMG]With hope, Linda
    Linda Tannenbaum, CEO/President
    Open Medicine Foundation
    www.openmedicinefoundation.org
    Linda@OpenMedicineFoundation.org
    Fast-tracking revolutionary research for ME/CFS
    and related chronic complex diseases


    Donate Now
    to join the Team of HOPE!
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    Turn Your Online Shopping Into Donations for Research.

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    Donate your old car, boat or plane and turn it into $$ to support research.
    (Available in the US only.)


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    We invite the patient community to get involved by sharing with friends and family on Social Media.

    [​IMG] [​IMG]
    Like us on Facebook
    Follow us on Twitter
    Please visit our website at www.openmedicinefoundation.org
    Donate to our cause


    Crack open the champagne or gluten free non alcoholic beverage of choice! :balloons::wine::beer::cocktail:

    Hope you enjoy it. Thanks to Linda for sharing this and @Rose49 for helping as always.

    Thanks,


    B
     
    Last edited: Oct 11, 2016
    Mary, Simon, mango and 34 others like this.
  2. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Excellent news about the donations! Much needed money. Not to mention the 30K raised on top. And congratulations to them too on the Top-Rated Charity Award! The work of everyone at the OMF is very much appreciated. :) :thumbsup::thumbsup::thumbsup:
     
    Mary, justy, Dolphin and 13 others like this.
  3. Neunistiva

    Neunistiva Senior Member

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    This is great news. I donate once a month but it can't compare to these large donations. I am so grateful.

    Is there by any chance any news about metabolomics test from Laurel Crosby? I know if there was you'd probably have told us, but I hope you can understand and forgive my impatience to get tested :)
     
    Mary, Dolphin, hixxy and 11 others like this.
  4. NL93

    NL93 Senior Member

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    @Neunistiva Same! I donate every month as well. A lot of these small donations can make a big difference too :)
     
    Mary, Dolphin, Cheesus and 9 others like this.
  5. Ben Howell

    Ben Howell OMF Correspondent

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    Hi @Neunistiva

    Thanks so much for your monthly donation! They are what keep OMF going and are extremely important.

    R.e. Metabolomics-We have confirmed that international shipping works in 2 countries (so should be fine for any country due to the fact the shippers last upto 32 days frozen!).

    Its not quite ready to roll out (running a test sample first) but as soon as it is commercially available I will let you all know and a forum thread will be started :)


    B
     
    Jill, Mary, Jennifer J and 9 others like this.
  6. Ben Howell

    Ben Howell OMF Correspondent

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    Thanks so much @NL93 :thumbsup:

    And yes the smaller donations make a HUGE difference!


    B
     
    Dolphin, NL93, Comet and 2 others like this.
  7. Ben Howell

    Ben Howell OMF Correspondent

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    P.s

    Is there a thread where the big donations to research are 'recorded'? Im sure I saw something like this (to do with Lipkin) a while back but cant find it in search. Maybe im getting confused.


    B
     
    Jennifer J and Ysabelle-S like this.
  8. NL93

    NL93 Senior Member

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    @Ben Howell This is just me being curious, but how much money comes in from donations every month?
     
    Jennifer J and BurnA like this.
  9. *GG*

    *GG* Senior Member

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    Maybe an Average number from "small" donations number?

    GG
     
    Tuha, Jennifer J and BurnA like this.
  10. BurnA

    BurnA Senior Member

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    I would love to know this too and I think it would be useful to publicize.

    Some people probably have the impression that their $10 or whatever isn't going to make a difference but if the OMF pulled in a significant figure every month from small donations alone, it might encourage people to donate more.
     
    Ben Howell, Tuha, mango and 1 other person like this.
  11. Neunistiva

    Neunistiva Senior Member

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    I know this wasn't aimed at me but since I started this conversation I would just like to clarify, I don't for one second think my or anyone else's donation is insignificant, and I donate without fail once a month as much as I can. I was just trying to express my gratitude to large donors.

    To fully fund OMF with donations like mine we would need less than 10,000 people to donate. There are millions of us around the world. We can do this!
     
    Comet, Ben Howell, Tuha and 4 others like this.
  12. Dolphin

    Dolphin Senior Member

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    Thanks to everyone who donates either once or regularly. As people say, given the numbers affected large amounts can be raised with small donations alone.

    Also the more people you get donating, the more people with more substantial assets you bring in who can give larger donations.

    We can make a huge difference and leaving research funding almost completely to government funding is a risky approach. And the more smaller studies one can fund, the more researchers there are to submit applications for government funding including applications which have pilot data which have the best chance of getting funded.
     
    Mary, Ben Howell, Tuha and 5 others like this.
  13. Dolphin

    Dolphin Senior Member

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    http://forums.phoenixrising.me/index.php?threads/donations-to-me-research.46146

    I see you have now posted there. Other people from this thread who have donated could also post.
     
    Ben Howell likes this.
  14. Ben Howell

    Ben Howell OMF Correspondent

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    Hey guys,

    I spoke to Linda and in her words: "last year, we raised about $2million. We will report this year after Dec 31st".

    The aim is $5million a year (or more!) but any amount, even small donations add up. And as we all know the research that this supports is absolutely world class :)

    Thanks for your support,


    B
     
    Valentijn, Roy S, mango and 4 others like this.
  15. Ben Howell

    Ben Howell OMF Correspondent

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    Solstice, mango, Sushi and 2 others like this.

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