SCIENCE is my HOPE!! I support OMF because I know how hard Dr. Davis is working for us. When your child is ill, you'll move heaven and earth to help them. I think someday we're going to get some good news! Thank you, OMF!!
FROM CANADA!! We run a local support group in Ontario and we're thrilled with all that Open Medicine Foundation (OMF) is doing on behalf of ME sufferers, not just those living in their own region or even in the States, but for the global ME community. They work hard on every front (research, education, awareness, fundraising, etc.) and have accomplished more in the last few years than we could possibly have imagined in decades previous.....yet there is still much more to do and OMF is up to the challenge. They have rekindled hope for many who felt abandoned and re-energized those of us who have become weary as caregivers, like myself (sadly there was no 'caregiver' option in choosing a role below). Keep up the wonderful work, OMF!!!!
OMF has all my esteem for the enormous work it is doing and for how it is working! A great hope for millions of sufferers of ME / CFS. But their work could contribute to research into various diseases. Great commitment, seriousness, involvment of great researchers, excellent communication.
Open Medicine Foundation OMF is a great organisation that gives hope to millions of suffering MECFS-sufferers. Actually it's a shame that organisations like OMF have to do the work official institutions like NIH should do. But official institutions don't care preferentially about the suffering of patients but about their budget, profit and public reputation. OMF is not dependened on political guidelines. The main purpose of OMF is to help patients suffering from MECFS. With their diligent and highly qualified staff including top-scientists OMF finally wants to clear up the mystery of MECFS and wants to put an end to the inhuman ignorance and neglect of severe ill patients by official departments.
This organization is my only hope for finding a cure for ME/CFS and having my life back some day. THANK YOU
Great Organisation we definitely need them for this horrible disease. To be honest Prof. Davis and OMF is currently the onliest organisation that could really change something in the nearby futur.
I honestly don't think I can articulate in a few words just how amazing the Open Medicine Foundation really is!
I've been a patient with ME for over 15 years and the fantastic work that the OMF does has given all patients with ME real HOPE that things will change for the better in the future. Linda T is so driven, enthusiastic and passionate about progressing research into ME and is linked to so many world-class researchers such as Prof Ron Davis at Stanford that real progress has already been made in researching the illness and I'm sure even more will be in future. I'm about to host a fund-raising event for ME and am absolutely delighted to be sharing the proceeds with the OMF as I know the money will be wisely spent in advancing our understanding of this debilitating illness.
THANK YOU to Linda and all the OMF for their amazing and inspiring work!
OMF is one of the most dedicated research organisations to a discriminated disease. They stand strong against criticism and hostility from the medical profession, which chooses to stigmatize the 20 million people suffering from myalgic encephalomyelitis (ME), a highly disabling disease that receives absolutely no support or sympathy in most countries.
Most medical research non-profits benefit from social support and good will. They are praised for striving to achieve a goal that makes consensus: helping the sick. Research in ME receives none of this good will, instead facing criticism and derision from medical institutions and professionals who overwhelmingly deny our very existence.
It takes courage to do medical research in any setting. It takes so much more courage to do so when the whole world disagrees that your cause is worth fighting for. Discriminating against disease should be a thing of the past, but it continues, and I salute and thank OMF for their determination and pushing forward with this cause.
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!