2016 Accomplishments
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 the unwavering support of the ME/CFS community, OMF advanced 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 are delighted to share with you highlights of our recent accomplishments:
Expanded the members and expertise of the OMF ME/CFS Scientific Advisory Board by 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
Raised over $5.3 million since 2012 to invest in our collaborative research projects, including 3 major studies (Severely ill Big Data Study, Metabolomics and Genetics Validation, and the B12/Folate/MTHFR study) and several small projects. We can't thank the patient community enough for their trust and generosity!
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.
Continued 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, initiated development of and enhancement of a platform for raw data of the Severely ill Big Data Study to be OPEN to all qualified researchers.
Held small-group meetings of the OMF ME/CFS Scientific Advisory Board members to review progress and make recommendations to fast-track results.
At the London IiME Conference: Dr. Ron Davis presented 3 talks and CEO Linda Tannenbaum attended.
At the #MillionsMissing events in San Francisco in May and September: OMF speakers were Dr. Ron Davis, Janet Dafoe, CEO Linda Tannenbaum.
Attended the IACFS/ME Conference in Fort Lauderdale, Florida, giving presentations and speaking with other attendees at the OMF exhibitor table: Dr. Ron Davis, Dr. David Bell, CEO Linda Tannenbaum, and Marilyn Simon-Gersuk.
Dr. Davis and Linda Tannenbaum spoke at the INIM pre-conference about the importance of collaboration.
In the conference, Dr. Davis presented novel approaches to studying ME/CFS.
Initiated by our CEO Linda Tannenbaum, had several meetings with Vicky Whittemore at the NIH-NINDS–in Washington, DC; London; and Fort Lauderdale, Florida.
Initiated by Dr. Ron Davis, had one-on-one phone conversations with NIH director Dr. Francis Collins, asking for increased funding.
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.
Represented by Janet Dafoe, joined other strong advocates in leading an effort that culminating with 55 US Senators signing on a call for action to NIH for increased ME/CFS funding.
Supported and worked with other patient advocates to push for additional government funding.
Community and Partnerships
Hired Marilyn Simon-Gersuk as director of Communication & Development.
Benefited from a new and clever international fundraising and engagement campaign created by our friends in Australia and the UK: Undies on the Outside.
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.
Kept in touch with hundreds of thousands of patients, building a global community: "OMF Team International."
Achieved Platinum status with GuideStar in recognition for nonprofit transparency and donor accountability.
Won the 2015 and 2016 Top-Rated Award from GreatNonprofits as a result of positive donor reviews.
Established a reputation as the leading open and collaborative research entity worldwide for ME/CFS.