Open Medicine Foundation®
Leading research. Delivering hope.
ME/CFS and related chronic complex diseases

February 2016 Newsletter

OpenMedicine Foundation(OMF)
Over $2.0 million raised in 2015 
Update and more…
 
OMF’s 2015 Year in Review
As the days become longer again, we look forward to more progress in 2016 toward meeting our ME/CFS research goals. But as we hang a new calendar in the kitchen, we decided to look back on our third year as a foundation. 
 
We’re not a toddler organization any more. In 2015, we made big leaps in funding, planning, growth, public awareness and research initiatives.
 
We want to share this analysis with you, because we consider you part of our team, so these are also your accomplishments as an OMF supporter. 
 
Funding:
All milestones we accomplish toward ME/CFS scientific discoveries require effort and funds. Our willing spirit and effort are not enough without the money. In the spring of 2015, we set the ambitious goal of raising $5 million a year for the End ME/CFS Project. We didn’t meet the goal in 2015, but we certainly increased the fundraising momentum. 
 
To take us to the next level, we hired a fund raising consultant company. We had more donations in 2015 than 2014 from both large-amount and smaller-amount donors.
 
We set up a platform for patients and loved ones to create their own personal page to tell their own story and be a part of the effort to fund research for a cure. 
 
As we act more strategically, and we show results, those who share our goal of Ending ME/CFS are entrusting us more and more to use their charitable donations wisely and efficiently. We take this responsibility seriously and will make sure we put research first.
 
Our success of raising over $2.0 million in 2015 will need to be eclipsed to speed up the discoveries of biomarkers and treatments. The patients have waited long enough. Our goal for 2016 will again be $5 million. With a full year to work on it and more ideas for funding sources, along with broadening individual support, this goal is attainable.
 
Growth:
Funding is necessary, but the actions of people actually make that money produce. Thanks to Ronald W. Davis, PhD, our ME/CFS Scientific Advisory Board was formed in 2014-2015 and has renowned scientists now helping to End ME/CFS.
 
Who would have thought Nobel Laureates and highly respected scientists doing groundbreaking work would officially give their name to helping research ME/CFS? This gives tremendous credibility to the field and should attract even more researchers. 
 
Our growth is also in volunteers. The army is growing. But, there’s room for more. If you want to give of your time or expertise toward Ending ME/CFS in 2016, let us know. I’m sure there’s a way you can help.
 
Planning:
In the step-by-step process, after the scientific expertise was brought in, it was time to set a research plan. In the spring of 2015, our ME/CFS Scientific Advisory Board decided ending ME/CFS would bring focus to our efforts; thus the End ME/CFS Project was born.
And isn’t that what we all want? 
Because the need is so great in finding the mechanisms of ME/CFS and because of the overlap between ME/CFS and many other diseases, we knew discoveries in this disease would have the greatest impact—even in fibromyalgia, chronic Lyme disease and other neuroimmune diseases.
 
The Scientific Advisory Board determined a study on the severely ill will likely reveal biological abnormalities driving the symptoms. Because the symptoms are more severe in these patients, the abnormalities should be more pronounced, stronger. So the Severely-Ill, BIG DATA Study became Phase I of the End ME/CFS Project. This is a comprehensive look at the molecular activity of about 20 severely ill patients.
 
Ron Davis, PhD along with Andy Kogelnik, MD,PhD and his esteemed team at Open Medicine Institute are leading this study which should take 9-12 months.
Phase II will include testing the levels of biomarkers in the severely ill to patients with the same disease who are not as severely debilitated. Do these patients have the same biological abnormalities? And we will see if people with other diseases also have the same biological abnormalities to determine what biologically distinguishes this disease from others.
 
Such a systematic, comprehensive and comparison approach has never been done in researching this illness. And it is long overdue. So we expect many discoveries and possibly THE big discovery that answers the question of what mechanism causes ME/CFS symptoms.
We are currently raising money for Phase II, the Moderately ill Patient Study, that will follow on the results of the Severely Ill Big Data study.
Let’s continue to keep up the momentum.
 
Public Awareness:
With the plan in place, it was time to get funding for Phase I and let the world know what we planned. We got our social media army active and reached out to blogsites reporting on ME/CFS. Because of the generosity of Dr. Davis and his family in being open about their personal struggle, our research plans received national news media attention.
 
With the expertise of our creative website manager, we improved the look and added more helpful content to our website. 
 
Our website now includes a news blogpost so that news can be easily shared in newsletters, third-party websites (including news media websites) and social media. We’ve added videos, links to other resources, easy-to-read research project summaries and more. 
Whew! Can you believe all this was done in one year? We couldn’t have done it without you. Thank you for your support. Now, let’s get busy to do more in 2016! 
OpenMedicine Foundation
Tax ID: 26-4712664
Collaborating to Fast Track Answers
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 Executive Director:
We are extremely grateful to our supporters and donors that are making this urgent research possible. We are elated to tell you that the ME/CFS Severely Ill Big Data study is underway with the first patients being drawn. This study will give us a tremendous amount of information that will lead us to the next steps.  Thank you all for reading our newsletter and being a part of the momentum. 
 
With hope,
Linda
Linda Tannenbaum, Executive Director
OpenMedicine Foundation
Linda@OpenMedicineFoundation.org
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 We invite the patient community to get involved by sharing with friends and family on Social Media.
   
Winter 2016 
>$2.0 million raised in 2015
Director
Ronald W. Davis, PhD
Genetics & Biochemistry
Genome Technology Center
Stanford University 
 
Paul Berg, PhD
Nobel Laureate
Molecular Genetics
Stanford University
 
Mario Capecchi, PhD
Nobel Laureate
Genetics & Immunology
University of Utah
 
Mark M. Davis, PhD
Immunology
Stanford University
Craig Heller, PhD
Biology & Exercise Physiology
Stanford University
 
Andreas M. Kogelnik,MD,PhD
Infectious Disease
Open Medicine Institute
 
Baldomero M. Olivera, PhD
Neurobiology
University of Utah
 
Ronald G. Tompkins,MD, ScD
Trauma & Metabolism
Harvard Medical School
 
James D. Watson, PhD
Molecular Genetics
Nobel Laureate
Human Genome Project
 
Wenzhong Xiao, PhD
Computational Genomics
Stanford/Harvard University
 
Linda S.E. Tannenbaum,
Executive Director
Kimberly Hicks, Treasurer
Patricia  J. Linsley, Secretary
Tina D. Orkin, Event Coordinator
R.P. Channing Rodgers, MD
Deborah Rose, MD
Kenneth Walker, MD, PhD
 
Contact Information
Tel 650-242-8669
EIN: 26-4712664