We had the good fortune of connecting with Linda Tannenbaum and we’ve shared our conversation below.
Hi Linda, we’d love to hear more about how you thought about starting your own business?
Linda Tannenbaum is the CEO/Founder/President of Open Medicine Foundation (OMF), the largest private global research organization focusing on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is affecting millions of more people with long COVID. OMF supports 7 Centers in 4 countries on 3 continents, and is based in Agoura Hills, CA.
In 2006, our world changed forever. My 16-year old daughter was so severely ill she could not get out of bed. Overnight she went from being a healthy teenage girl to no longer having the energy to do the most basic of tasks. My husband and I would take her to see 20 doctors only to find there are no answers.
She eventually got a diagnosis for myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS, and we were told that there are no recommended treatment options.
I realized that I was going to have to find a solution, and it is my goal to this day- not just to help my daughter, but the millions that I found out were suffering too. As a mother, I knew I had to do everything in my power to help my child, and I am still on that journey today. I am thankful that our daughter is one of the lucky ones that has improved enough to be able to live the life that all deserve but most are not as lucky and I am determined to find answers to help them return to good health.
By 2012, when I saw no end in sight, I launched Open Medicine Foundation to accelerate research for chronic, complex diseases like ME/CFS. Ten years later, we have established and are supporting 6 research centers and 1 medical education center in 4 countries on 3 continents racing to find a cure and improve healthcare.
I am proud to say that in April 2020, Open Medicine Foundation launched the first privately funded Long COVID and ME/CFS study to understand the link between the conditions and why some bodies do not recover from viral infections. This moment in time could help all of us, all of our children who have been waiting for a cure.
I have carried hope for a long time and now I am beginning to see answers take shape. We are still quite a ways away from a cure, but I know we will get there. We must!
Can you give our readers an introduction to your business? Maybe you can share a bit about what you do and what sets you apart from others?
Being our 10th Anniversary year, we are proud to say that we have funded over 50 research projects, raised over $40M, including this year which is not done yet, and ignited research all over the world following our lead and helped raise millions more funding which goes directly to accelerate the research at our OMF-supported Centers. We take pride in being transparent and continue to be proud of our top ratings on GuideStar, Charity Navigator 100/100 and “Top-Rated” with Great Nonprofits for years.
Most importantly, we are grateful and thankful to our inspiring patient participants, incredibly dedicated team, our research directors and our committed and supporting board members because we were only able to accomplish this with all of them working together.
Open Medicine Foundation is a US based global nonprofit, with an affiliate organization in Canada (OMF Canada) and a foreign branch in Australia (OMF Australia Ltd). Our 19 member Scientific Advisory Board is world renowned and includes two Nobel laureates and 6 National Academy of Sciences members.
41+ OMF Team members: Staff, 3 Boards of Directors (14 members total), 19 member Scientific Advisory Board (including our 7 Directors) plus the teams at each Collaborative Research Center (countless and growing) and volunteers.
Staffing: 5 full time employees, 2 independent contractors
We have an incredible OMF internal team that works exceptionally well together, via zoom and email; we continue to run lean and efficient.
Research Entities: (7 Centers)
We are proud to say, we have 7 Centers, on 3 continents, in 4 countries all collaborating with each other: (This is the dream from the beginning…open collaboration between researchers).
In order of launch:
1. 2012 Launch of Open Medicine Foundation
2. 2014 #1 ME/CFS Collaborative Research Center at Stanford: Director Ron Davis, PhD.
3. 2018 #2 The Ronald G. Tompkins Harvard ME/CFS Collaboration at Harvard Affiliated Hospitals: Current Co-Directors Wenzhong Xiao, PhD (Mass General Hospital) and David Systrom, MD (Brigham and Women’s Hospital); Sadly Ronald Tompkins passed away, Jan 2022.
4. 2019 #3 ME/CFS Collaborative Research Center at Uppsala University, Sweden: Director Jonas Bergquist, MD, PhD, OMF’s Chief Medical Officer
5. 2020 #4 ME/CFS Collaborative Research Center at the CHU Sainte-Justine Universite de Montreal: Director Alain Moreau, PhD
6. 2020 #5 Melbourne ME/CFS Collaboration: Director Chris Armstrong, PhD
7. 2021 #6 Computational Collaborative Research Center, Director Wenzhong Xiao, PhD
8. 2022 #7 Medical Education Resource Center at Bateman Horne Center, Utah, Director Lucinda Bateman, MD
Medical Education Project with Bateman Horne Center
We are partnering with Dr. Cindy Bateman of Bateman Horne Center, Utah, as the Medical Education Director to run this program which will include resources for patients, healthcare providers, telementoring, and fellowships for the purpose of training more specialists, training more primary care healthcare providers, and empowering patients with information about ME/CFS and post-viral diseases like Long COVID.
Focus of fundraising on small clinical trials: After 10 years of gathering data from our funded research and others, we are ready to start small clinical trials to reduce symptoms and learn more about which things work for what symptoms and what and how mechanisms are being affected. We want to raise as much money as possible to accelerate and scale up these trials to translate this research to help as many patients as possible as quick as possible. This is POSSIBLE!
Who else deserves some credit and recognition?
We want to acknowledge and thank our 3 foundation boards, OMF , OMF Canada and OMF Australia, for their personal dedicated engagement and support of our efforts. We want to acknowledge and thank our remarkable 19 member Scientific Advisory Board members for their guidance and advice on the research.
We want to acknowledge and thank our incredible, hard working, dedicated staff members for working day and night with their hearts and souls.
We want to acknowledge and thank our generous donors who contribute and support all of the work that we are doing.
We want to acknowledge and thank our participants of the studies because without them, we could not do this without them.
We want to acknowledge and thank the patient community for their patience, their input, their engagement and their advice in all that we do.