My son To is 23 years old, bedbound, semicomatose, suffering from severely severe M.E., Myalgic Encephalomyelitis, aka CFS, that affects 17 million worldwide. Yet gross discrimination by HHS, NIH against 1-2 million ill in USA has led to paltry, inadequate funding for R&D, so no FDA approved diagnostics, 80% are not diagnosed, and no FDA approved treatments, so millions remain ill, typically lifelong, since most never recover fully. OMF has organized leading researchers internationally, sponsor meetings of the best minds for ME in the world, & seeks donations, support from foundations, philanthropists, individuals to help #MillionsMissing with this #ForgottenPlague. Please help end a "Total Eclipse of my Son" for last two years, where he is bedbound, unable to open eyes, so shades and total darkness - and help millions of others. OMF.NGO is sponsoring the leading research in the world for M.E.! This medical disease is one of the last great mysteries in medicine, & is worthy of a Nobel Prize for whoever can figure out this complex puzzle.
OMF is raising funds to do leading edge research to find biomarkers, diagnostics, eventual treatments, cures, prevention for M.E., Myalgic Encephalomyelitis. Linda Tannenbaum is doing a superb job of leading this effort to cure over 1 million ill in US, perhaps 17,000,000 worldwide. She has met with experts and patients nationwide and even visited my 22 year son at our home last month, showing her true compassion. I focus my donations on OMF since it is a leading organization funding key patient R&D including the severe ME/CFS patient study that was started early this year (Feb 2016).
The Open Medicine Foundation does groundbreaking work for 20 million ME/CFS-sufferers worldwide. I live in Germany , bedbound, and the OMF is the reason I haven't lost hope. Ron Davis is brilliant and my personal hero.
My experience of this non profit is quite simply one of hope. Their end me/cfs project, their collaborative approach toward research, the quality of research they fund and scientists involved, their support of having the pace trial questioned, their advocacy, its incredible and with all the focus on the science there is still clearly a genuine respect and appreciation for the real people who are living with the illness. But more than that as a person with m.e/cfs they give me hope, with a condition where you can feel neglected and let down, it is the difference between feeling utter despair and giving us something to hang in for. The omf and the work their involved with has single handedly restored my faith in the scientific community, in research, as a patient with cfs/me the omf has my utter trust, trust that they will fund quality research, trust that the research will be conducted properly by excellent researchers, trust that patients involved in research will be treated ethically, trust they're only agenda is one that will be in a patients and science best interests. I cannot speak highly enough of the OMF or truly express what their work means to those of us living with the condition, and I frequently see many people specifically cite OMF and their work as literally giving them a reason to keep going, there is no higher complement a person can pay. They are simply and without overstating it in any way, heroes.
Efficient and smart use of funding. Very effective at building direct collaboration among scientists and medical professionals and promoting sharing of research at stages that are much earlier than the publication process. OMF is one of a severely limited number of non-profits focusing on ME/CFS research, a debilitating disease that currently has no FDA approved diagnostics or treatment. This organization has attracted brilliant researchers, and their Scientific Advisory Board is an impressive line-up of talent. Their dedication to fast-tracking research is very evident and extremely unique. They are also excellent with transparency and organization, which are critical for being a top, effective non-profit. Not only do I trust them to make the most of funds I have donated, as an ME/CFS patient, I trust them with my future.
I'm very happy with the recent research breakthroughs they've made, and the diagnostic blood testing material that they're developing in addition to trying to learn more about ME/CFS, and develop a treatment or cure. They're a shining beacon of hope for those of us that are struggling to do the things that a healthy adult would consider necessary to survive.
My daughter has ME, and I run the ME/FM Society of BC in Canada. The work that the OMF does gives us hope. They provide the community with excellent research, great information and opportunities, such as the live streaming of their Community Symposium on 12 August at which world class researchers and clinicians will be presenting the latest research. The OMF is a beacon in the darkness that is this awful illness.
My daughter is 24 and has been disabled by this ME/CFS since her late teens. There has been shamefully little funding made available for this illness, and The Open Medicine Foundation is one of the few organisations doing serious research in this area. They have worked tirelessly to bring the best minds to their projects, and their efforts are all the more laudable because they are functioning in an environment where there is little to no financial support for such work. The OMF is a great source of hope for my daughter and our family, and hope is all we have to keep us going right now.
Their work could change our lives & possibly in my lifetime.
That's exptreme,y important for those of us who are at the severe & extreme end where quality of life is lower than those with MS & those undergoing chemotherapy.
It feels like we've been seen. It feels like we've been heard. It feels like a miracle could happen.
Amazing people, highly engaged and involved especially in the ME/CFS field. Groundbreaking research towards the end of ME/CFS.
So far, OMF is one of the best things that has happened to the ME community.
OMF has given me new hope for tomorrow.
It means the world to me, to be understood and to be high priority to doctors, that they are working to solve this madness.
I'm so grateful!
I'm so happy that nonprofitt still has a value for people, and that to make a difference is enough.
Love and kindness still exists, in the Medicine-world, too.
We have seen the bad things that money has done in the case of the ME/CFS study PACE.
I'm convinced that NON profitt is important.
The medical advisery board of OMF is amazing.
Thank you for doing this!
Kathrin Storheil, Norway.
OMF are giving patients like me with CFS/M.E hope for the first time. They have become a global force for groundbreaking research into this debilitating disease, and their efforts to educate and advocate around the world are inspiring. OMF are a lifeline to us!
The OMF is an exceptional group of scientists that go way above and beyond to increase the understanding of the disease ME/CFS worldwide. The have an incredible knack of doing mind blowing science and communicating those findings into an easy to understand message.
This organization is constantly working on behalf of finding a cure for this horrible disease.
Open Medicine Foundation is on the cutting edge of genetic based research and medicine not only for chronic mysteries such as ME/CFS, FIBRO, LYME, but all diseases. The leadership duo is stunning with both leaders having family members directly impacted by these illnesses and the skills to solve the problem. They have assembled a global team that is collaborative, not competitive, and as such is a stellar example for government entities as NIH, CDC, HHS who are light years behind medicine required for the 21st century. As a Bay Area Development Director of 20 years, and now a bedridden ME/CFS patient for 4 years, I recognize talent, and the recipe for success at every level in OMF which has more than earned 5 stars - in less than 3 years. Join M.E. in #SillySheets, a volunteer driven campaign in solidarity with bedridden patients, to raise awareness and funding for OMF www.omf.ngo - from bed! #EndMECFS
They are giving me hope. Something I lost. I feel that they are fighting for me, I mean really fighting. I'll be forever thankful.
Amazing work towards understanding and helping those of us with ME /CFS!
Open Medicine Foundation has given me back my hope, when I had all but given up. I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for 22 years, & for the first time since I became ill with this very disabling disease, I feel that their research may bring about some sort of treatment, & hopefully, a cure. Until recently we were forgotten, disbelieved, left without treatment, support & understanding, by the medical profession, governments, friends & family. Millions of people worldwide are struck down with ME, & have nowhere to go to get help. OMF has shown we are physically ill, when so many didn't want to know. Not much money is allocated into research of this illness, & I am forever grateful to OMF for trying to get answers with their End ME/CFS research programme. They have an understanding, & compassion for those of us afflictedwith ME, & a dedication to getting results. A huge thank you to all of you at OMF!! Please keep on doing what you do best...
I consider Open Medicine Foundation a leader in research for myalgic encephalomyelitis /chronic fatigue syndrome. Its origins are parent based. When a child is in danger there is no greater strength or focus.
Our son was diagnosed August 2015 following a four year flu that has slowly and painfully taken away his hopes and dreams. One by one. He remains hopeful but realistic about the roadblocks that our government continues to put in place preventing meaningful treatment or cure.
The first information we had about ME/CFS was a July 2015 video about Ron Davis, Janet Dafoe, their son Whitney and daughter Ashley. Little did we know the parallels our lives would share. But there was hope. We soon learned about Open Medicine Foundation and their commitment to fund research to end this horrid illness that has taken our son captive. OMF's President and CEO, Linda Tannenbaum is another parent with skin in the game.
Every opportunity we have, we give to this organization of parents trying to save our children. Cash, Amazonsmile, cars, family donations, offering outreach in our area and more. There is no research organization we trust more to find the answers. Today OMF is hosting a global conference for researchers followed by a Community Symposium for to public. It is sold out. Open Medicine Foundation has tremendous credibility in the ME/CFS world. They are the "good guys" who continue to make connections and fight for our son.
Open Medicine Foundation is a shining star for patients who suffer from ME/CFS. This organization's efforts in organizing and conducting research into this long-neglected, incapacitating but very common disease is light years ahead of the status quo. If an option were available, I would be giving it 100 stars.
The OMF is funding groundbreaking research on ME/CFS and deserve recognition not only for scientufic advancement gained but also for their excellent awareness campaign.
Open Medicine Foundation and their relentless effort to find diagnostic tools and a cure for this disabling disease gives hope to all ME sufferers around the world.