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

December 2015 Newsletter

Open Medicine Foundation(OMF)
Over $1.9 million raised in 2015 
Update and more…
 
Over $1.9 million raised in 2015
Severely Ill Big Data Study begins
We want to sincerely THANK YOU for this very busy year that we had at OMF as the community donated many large and small donations and enabled us to begin our Severely Ill-Big Data study, the first research study looking for biomarkers in severely ill ME/CFS patients. 
 
This year, we had three goals: raise $5 million a year for the End ME/CFS Project, raise $1 million for Phase I of that project (called the the OMF ME/CFS Severely Ill-BIG DATA Study), and get that study started. We met the two latter goals and look forward to reaching the larger goal in 2016.
 
This year, we got a good start into the ambitious End ME/CFS Project. But we need to increase the momentum-step up the pace-and raise the needed $5 million each year.
 
Severely Ill Study Tests Expanded
For every good action, there’s a (good) reaction. The tremendous financial support we received lately has allowed us to enhance the OMF ME/CFS Severely Ill-BIG DATA Study with more tests. As always, our ME/CFS Scientific Advisory Board is guiding the way and making refinements so that our research gets as many solid answers as possible. See a more in-depth explanation, an updated test list and a link to a very good HealthRising article about the changes in this announcement.
New Personal-Story
Fundraising Opportunity:
OMF has a Crowdrise page that is waiting for you to tell your personal story and set up your own fundraising page. You can make it fun by offering to do some silly act if your funding goal is met (grow a mustache, wear a funny costume in public―get creative. It’s your project.)
And, we have gone a step further and provided a very easy step-by-step guide. All the funds from this type of fundraising will go to OMF to help continue to expand the research with no more than 5% going to Crowdrise for merchant fees and for letting us use their software. All of the donations are tax-deductible.
 
US Government News that
Affects ME/CFS Research
In an October 2015 press release, the National Institutes of Health announced they have a new program to advance research into ME/CFS. Under the leadership of the National Institute of Neurological Disorders and Strokes, we expect this new “research protocol at the NIH Clinical Center” will mean more research done by NIH and more NIH funding for researchers outside of the NIH.
We were struck by the strong wording in the press release that shows a better understanding and interest in ME/CFS. It says this new initiative is to “intensely study individuals with ME/CFS” and that it will also re-invigorate the efforts of the existing Trans-NIH ME/CFS Research Working Group, which already has representatives from many different NIH institutes looking for ways to fund and advance ME/CFS research.
Many have asked how or if this change will affect OMF research. See the answers in this announcement.
We are also very pleased that the recently passed US Federal Budget reintroduced $5.4 million for ME/CFS research at the Centers for Disease Control and Prevention for ongoing projects. This funding had been removed from earlier budget drafts.
Also, the NIH budget has an increase of $2 billion, opening up even more opportunities for increasing the NIH role in ME/CFS research.
 
The Davis/Dafoe Family’s ME/CFS Experience
Attracts a Swarm of News Media Attention
No one can deny it’s a compelling story: An innovative scientist helps in making other discoveries, but now he struggles to do the research that may save his own son. Our ME/CFS Scientific Advisory Board Director Ronald W. Davis, PhD, has told his family’s tragic story to many. The funding for this ME/CFS research, first focusing on the severely ill, is coming from our foundation.
The Washington Post, The Atlantic, The BBC, and many more reported on this, all with a different angle. You will find the descriptions and images powerful and riveting. 
See some of the titles of these reports and links to them at our OMF In The News Page.
 
Congress Passes IRA
Charitable Rollovers Legislation
A new US law makes the IRA charitable rollover permanent and retroactive back to January 1 of this year. Those 70½ or older may transfer up to $100,000 this year (before December 31) from a personal retirement account to the Open Medicine Foundation. Then do it again right after January 1, 2016 to double the impact and keep the rollover benefits in both cases.
As a reminder, we can also accept donations of stocks and bonds. The benefits to you are avoiding a 20% (or more) capital gains tax, income tax deduction for the full gift amount, make a difference to ME/CFS research with no out-of-pocket cost, and avoid a value loss through market instability.
Contact us by email or at 650-242-8669 and contact a tax advisor so that the donation is made wisely.
OVER TWENTY US ORGANIZATIONS
AND ADVOCATES ANNOUNCE
NEW WORKING GROUP
Open Medicine Foundation and #MEAction are thrilled to announce that we are coming together with over twenty other organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the announcement letter link and find out how you can get involved.
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 in January. 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. 
 
Happy Holidays and best wishes for a healthier New Year for all,
Linda
Linda Tannenbaum
Executive Director
OpenMedicine Foundation
                      Linda@OpenMedicineFoundation.org
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December 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