OMF Newsletter Year in Review – December 2016

Year in Review & Looking Ahead

Before we say good-bye to 2016, OMF wants to share with you what we accomplished this year by working together!

In 2016, Open Medicine Foundation led the effort to advance medical research for ME / CFS. We brought together thousands of patients, family members, care givers, and advocates. With your unwavering support, OMF has worked tirelessly to advance research on ME / CFS and related chronic, complex diseases to help millions of patients around the world. Together, we have ignited HOPE for patients. Thank you for being a part of this ground-breaking year. We invite you to make 2017 a year to end ME / CFS by donating to research today.

• OMF’s ME / CFS Scientific Advisory Board expanded its expertise welcoming David Bell, MD, ME / CFS expert clinician & Robert Naviaux, MD, PhD, University of California, San Diego, expert in metabolomics and mitochondria.
• Funded and enabled an expanded validation study of Metabolomics (Naviaux et al. 2016) which now also includes genetics. Status: Completed the sample collection and testing is in progress. Date of completion estimated at June 2017.
  “This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.” Robert Naviaux, PhD
• Completed the sample collection and clinical testing for the Severely ill Big Data Study. Status: Research testing and analyses are in progress. Date of completion estimated at June 2017.
• Working with collaborators in Stanford’s CFS Research Center, Dr. Ron Davis is leading a team in pursuit of a cell assay to use to test drug responses for ME / CFS patients.
• Under the direction of Wenzhong Xiao and his teams at Harvard University and Stanford University we are creating and enhancing a platform for raw data of the Severely ill Big Data Study to be OPEN to all qualified researchers.
• Scientific Advisory Board members are meet on an ongoing basis in small groups to review progress and make recommendations to fast-track results.
• Dr. Ron Davis (presented 3 talks) and CEO Linda Tannenbaum attended the London IiME Conference.
• Dr. Ron Davis, Janet Dafoe, CEO Linda Tannenbaum spoke at the #MillionsMissing Events held in San Francisco – May and September.
• Dr. Ron Davis, Dr. David Bell, CEO Linda Tannenbaum, and Marilyn Simon-Gersuk attended the IACFS/ME Conference in Fort Lauderdale, Florida.
• Dr. Davis and Linda Tannenbaum spoke at the pre-conference about the importance of collaboration. (video available)
• Dr. Davis presented at the IACFS/ME novel approaches to studying ME / CFS.
• CEO Linda Tannenbaum met several times with Vicky Whittemore of NIH-NINDS in Washington, DC, London and Fort Lauderdale.
• Dr. Ron Davis had several personal one-on-one phone conversations with Dr. Francis Collins, Director NIH asking for increased funding.
• Dr. Davis and OMF supported David Tuller in his effort to reevaluate the PACE trial and the current evidence that shows no benefit in GET or CBT for patients with ME / CFS. Efforts are being made to get the paper retracted.
• Janet Dafoe helped to build an advocacy effort with other strong advocates, culminating with 55 US Senators signing on a call for action to NIH for increased ME / CFS funding.
• Marilyn Simon-Gersuk joined OMF as Director of Communication & Development.
• Achieved Platinum status with GuideStar in recognition for nonprofit transparency, donor accountability.
• Winner of the 2016 Top-Rated Award from GreatNonprofits as a result of positive donor reviews.
• Benefited from a new clever international fundraising and engagement campaign created by our friends in Australia and the UK – Undies on the Outside.
• OMF launched Friday Stories for patients, caregivers, and parents to share their personal stories for inspiration, awareness and community building.
• Launched an OMF column on Phoenix Rising with the help of volunteer Ben Howell, OMF Correspondent, to keep the community informed.
• Partnered with new Social Media Ambassador, Cecilia Ekhem, OMF Sweden Volunteer, to share her poetry and inspirations for Motivational Mondays.
• Launched new corporate partnerships with ProHealth, CrowdChange and Precision Medicine World Conference 2017.

Open Medicine 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.

There are many unanswered questions about ME / CFS and related chronic, complex diseases. As supporters, we know how critical these answers are for you. Today you have the opportunity to fund research that can lead to answers. We invite you to help us further research in 2017 by making your end of year donation. Thank you for supporting HOPE.

With Hope, Linda
Linda Tannenbaum, CEO/President
Open Medicine Foundation
www.openmedicinefoundation.org
Linda@OpenMedicineFoundation.org
Collaborating scientific research to
fast track answers, treatments & cures.