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:
Research
- 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.
Presentations and Speeches
- 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.
Advocacy
- 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.”
Recognition
- 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.
