As you have probably heard by now, our recent Community Symposium on the Molecular Basis of ME/CFS at Stanford University was a huge hit! You can now read about the details in two pieces published by Raeka Aiyar, who emceed the symposium:
A high-level summary article, originally published on the Stanford School of Medicine Scope blog.
A detailed Storify post telling the story of the symposium, in an illustrative, easy-to-read format that combines photos, social media highlights, links, and useful resources for those who want to dig deeper.
If you’re still hungry for more, check out the full YouTube video of the symposium. Also, please read Dr. Davis’ heartfelt welcome message to attendees. Thank you once again to all those who participated, either at Stanford or virtually, to make this an event to remember!
Linda will share a research update and have a question and answer session with the audience. We have also arranged a special screening of UNREST with Linda’s Minneapolis visit.
If you are part of an active support group, can gather a group of 50 or more, and are interested in hosting an event in the US or Canada, please contact us.
OMF Awarded Platinum Guidestar Status and Great NonProfits 2017
As an internationally recognized non-profit, OMF is committed to ensuring that every donation we receive is used to support our mission to fund and initiate collaborative and ground-breaking research into chronic complex diseases so that patients will be able to live life more fully. To accomplish this, we are open with the activities and management of our organization.
Because of our commitment to our mission and donors, we were awarded Platinum status for 2017 by Guidestar. This meets the highest standards of accountability and demonstrates our efficiency and effectiveness in supporting our mission.
We were also awarded the 2017 Great NonProfit by you, our donors and supporters. Your reviews of OMF demonstrated our effectiveness and our relationship with our community.
Thank you for your active and ongoing support. We remain committed to you, our mission and patients around the world.
Team OMF is Growing
Thank you to the many people worldwide who have launched events and activities to support research. This month, we are happy to highlight Cindy Siegel Shepler who is introducing OMF and ME/CFS to the American Contract Bridge League (ACBL) starting with her local Knoxville Association (KABC).
In her honor, Cindy’s friends held a special tournament and designated OMF as the recipient of funds raised at the event. To read more about the fun Knoxville event and other inspiring stories of support, please visit our Team OMF page. Get inspired. Join Team OMF and help accelerate research.
We Now Accept Bitcoin
At the request of donors in the US and internationally, OMF has set up an account with BitPay and can now accept donations of Bitcoin. (If you are not familiar with bitcoin, it is a “cryptocurrency” or a peer-to-peer digital payment and asset system.)
Donors who are invested in Bitcoins can now donate their bitcoin directly to OMF. Your donation will be converted to USD and transferred immediately. If you are a Bitcoin investor/trader, we welcome your donation to support research. Please visit our website for more information. If you have any questions, please feel free to contact us.
Open Medicine Foundation
Tax ID: 26-4712664
To fast-track revolutionary research for ME/CFS and related chronic complex diseases.
To support collaborative scientific research to discover molecular causes, find effective treatments, diagnostic markers, prevention approaches and cures.
To communicate, engage and inform the patient community.
To help drive & support global collaboration
A Word from our CEO/President:
As you read above, in the last month we received our annual review by both Guidestar and Great NonProfits. It is an honor to lead OMF as it is recognized by both the non-profit sector and donors as exemplary. I want to personally extend my appreciation to you, our OMF family, for helping us to be recognized with these awards.
We thank you for being our partner and sharing our vision for a world free from ME/CFS and related chronic complex diseases. We dream for the day when patients are able to live life fully.
Last month was our mega ME/CFS event. We planned the research meetings hoping for positive support, increased collaboration, and renewed optimism. Our goals were surpassed with over 3,000 people from around the world, including researchers, clinicians, patients, family members and advocates all gathering to work towards a brighter tomorrow. I encourage you to follow our news in the coming months as we share new research proposals and plans to fast-track answers.
Thank you for being our partner.
Linda Tannenbaum, CEO/President Open Medicine Foundation Linda@omf.ngo
Fast-tracking revolutionary research for ME/CFS and related chronic complex diseases.
Happy #OMFScienceWednesday! Today we get to know the research of Dr. Mike Snyder, Chair of the Genetics Department at Stanford University, whose team is part of the ME/CFS Collaborative Research Center at Stanford that we are funding.
Dr. Snyder is a pioneer in the area of using a variety of technologies to monitor the health of individuals over time, which he calls ‘personal omics profiling.’ His research, which he describes in the video below, asks the question of what it means to be healthy, and how we transition from health to disease. Also, how do individuals vary in this transition, and in their responses to stressors like viruses? What role do genetics play in this? These questions are especially important for a disease like ME/CFS, where there is so much individual variation and viruses are playing a role that we still do not understand.
Dr. Snyder himself was the first volunteer for this research. He has donated samples over several years that have been used to generate billions of data points as he went through more than 10 infections, including Lyme disease. His molecular data correctly predicted that he would develop diabetes, which was triggered by a viral infection. In addition to molecular profiles using genomics technologies, Dr. Snyder also uses wearable devices in his research to monitor sleep, oxygen, heart rate, and more. His team has expanded this research to individuals with diabetes and many other diseases, now including ME/CFS.
OMF is honored to become a member of Hadassah’s Coalition for Women’s Health Equity. This group advocates for gender equity in medical prevention, research, funding, and quality of care; and raises awareness. OMF is thrilled to be bringing ME/CFS to the forefront in women’s health. To learn more, visit: bit.ly/2jNhwbF
Are you on Reddit? If so, please upvote for OMF to receive a donation of $15,000 in Bitcoins from an anonymous donor. Upvote the initial comment from AlexanderSupersloth and keep the chain going. (You must be registered on Reddit to participate.)