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Open Medicine Foundation

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Nonprofit Overview

Causes: Health, Medical Disciplines Research

Mission: Our Mission Supports collaborative medical research to find effective treatments and diagnostic markers for ME/CFS and related illnesses. Keeps the community informed by disseminating information on current research projects and results. Brings together thought leaders from around the world to brainstorm and participate in targeted initiatives. Encourages and engages the patient community to take an active role in research.

Results: Funded Research projects and new Research projects are underway.

Target demographics: Find diagnostic tests, effective treatments and a cure for ME/CFS and related illnesses

Direct beneficiaries per year: Medical Research for ME/CFS

Geographic areas served: Collaborative Research and Fundraising for ME/CFS and related illnesses.

Programs: Collaborative Medical Research

Community Stories

174 Stories from Volunteers, Donors & Supporters

13

Donor

Rating: 5

I strongly support the Open Medicine Foundation because I have been sick with ME since 1994 and largely bedbound the past ten years. The OMF offers our best hope for discovering effective treatment for ME. The OMF has an outstanding scientific advisory board, headed by one of history's greatest geneticists, Ron Davis, and including three Nobel laureates plus members of the National Academy of Sciences. These scientists have offered a brilliant, detailed plan for research, beginning with studying the very sickest ME patients--those who are bedbound or homebound, like me.

I make a recurring monthly donation to OMF. Its staff is always friendly, courteous and professional. I highly recommend donating to this charity.

11

Professional with expertise in this field

Rating: 5

Dr. Andy Kogelnick has been able to co-create a most productive team of experts in the medical and scientific field, who are dedicated to find the answers for a cure for ME/CFS. I also express kudos to Linda Tannembaum who is their executive director and one individual who has been a force behind the Open Medicine Foundation working diligently raising funds and creating awareness for ME/CFS and other related neuroendocrineimmune diseases. I wish them continuing success in all that they do. May they be blessed with good health and resilience to face the unsurmountable hurdles that they face in their labor of love to help a most forgotten community of suffering.

10 Writer

Donor

Rating: 5

This institute is trying very hard to research the illness that has devastated my life & youth for the past 21 years. I am lucky I have huge support from my family which many in my position do not. But we are all crying out to find a way to improve my quality of life, currently this simply is not there however this is one of the few organisations trying to help me my family & my equally ill friends.

10

Donor

Rating: 5

OMF is my hope for a healthy future with The End ME/CFS project. It is so motivation to fundraise as every dollar is a little step towards a life without illness.

13

Donor

Rating: 5

Hugely dedicated, transparent and genuine, this team never ceases to amaze me. Brilliant ideas, excellent focus and a rare, wonderful ability to get great scientists and other experts on board. Ms Linda Tannenbaum is one of the most passionately engaged people I've ever come across in the ME/CFS field, and I truly believe in her efforts and aims. I really appreciate the frequent updates on the current projects and what the money is being used for. With infinite gratitude, I wish you the very best of luck -- stay strong, be brave!

10

Client Served

Rating: 5

OMF's team of world experts is working hard to end the silent epidemic of ME/CFS utilizing a big data approach coupled with clinical research. ME/CFS is a painful, debilitating, and devastating disease affecting a million people or more in the US, yet it is almost unheard of in conventional medicine. Currently, it takes years for a proper diagnosis (if one is lucky enough to get a diagnosis), by which time, the illness can progress and limit chances of recovery.

Being afflicted with severe ME/CFS myself, I can honestly say that it is a disease more terrible than a hypochondriac's worst nightmare. I am saddened by the fact that the US government has spent more money on male pattern baldness and erectile dysfunction than on ME/CFS research, despite increasing incidence of ME/CFS in the past 30 years.

Without government funding, we patients desperately need OMF and their important work to find causes of and treatments for ME/CFS.

11

General Member of the Public

Rating: 5

As a registered pharmacist who has suffered greatly with ME/CFS/SEID for the last 12 years, I can state unequivocally that the Open Medicine Foundation is one of the VERY few research facilities in the entire world whose researchers not only understand how serious and disabling an illness this truly is, but also have a clear and concise strategy focused on unraveling the mysteries that have eluded us for decades. To this very day, the true nature and pathology of this disease has never been discovered and there is still not a single FDA-approved diagnostic test or treatment available, so God Bless the great work they are doing to change all this because I cannot even begin to express how badly it is needed. Please, do all you can to support the Open Medicine Foundation and let's beat this thing once and for all.

10 Christine150

General Member of the Public

Rating: 5

I have had ME for almost 28 years. The first few years I was very poorly then I went into part remission for many years, until in my early 50s the illness began to progress and has done for the last ten years. I am aware of the sincere mission of the Open Medicine Foundation to end this illness, which robs so many of us to function, physically and mentally. I received sincere thanks for the donation I made, and feel that the staff are personally interested in each and every one of us. Thank you all for your dedication and all the excellent work you are doing.
Christine Knott

9

General Member of the Public

Rating: 5

I have always been impressed with the work they do. Their tireless efforts give people like me living with ME-CFS hope for a cure.

8

General Member of the Public

Rating: 5

Their goal says it all ie to end ME/CFS,an illness which for decades has literally been a living death for people such as myself.We have met with disbelief at best to downright ridiculing,and this serious physical illness being "high jacked"by the psychiatric lobby....trying to exist(because in its worst form,that sums ones life up)is bad enough without the "it's all in your head"attitude.So the OMF is truly a beacon of hope for sufferers hidden from view ie we can't go on rallies,marches etc as we are too il,so it takes the OMF to speak up,then treat us.Surely at last this is the beginning of the end of ME?

9

Donor

Rating: 5

I have had severe ME/CFS, housebound and bed ridden for much of 23 years. Prior to my illness I was very active as a mum and teacher, high school and university and in the community. ME/CFS has cost me 23 years of life; my career, marriage and being able to participate in life as my children grew up. The severely ill are too sick to get to the doctors. Because of the cardinal symptom being PEM (post exertional malaise), the mere act of travelling can exacerbate symptoms and thus make a person suffer more, often for weeks and even months. The fact that this OMF research is going TO the patient is hugh and so needed. This OMF research is so important to bring out the pathology of ME especially the severely ill who make up at least a third of all sufferers. According to a recent Danish study ME CFS patients have the lowest Quality of Life scores out of 20 major illnesses.http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

11 MollyCounting

Professional with expertise in this field

Rating: 5

Doing the work that you would expect government to do in helping find bio markers for a devastating disease that costs the government billions of dollars and destroys lives.
Providing visibility for the profoundly ill that so often have no medical care. Forgotten, neglected and stigmatised.

11

Volunteer

Rating: 5

This is a dream team of researchers tackling the greatest medical mystery of our time. Support the cure to millions of suffering Americans-ME/CFS-we are so grateful for this dedicated team, including 3 Nobel Laureates-even the great Watson himself!

11

Donor

Rating: 5

I am the father of a severely ill ME/CFS daughter whose condition has gradually declined over the past 20 years. For the first time in years, I feel hope because of the Open Medicine Foundation and its sponsorship of the work of Ron Davis and other top-rank scientists. His study will be one of the rare ones that focuses on bed-bound patients who are unable to go to the doctor let alone go to a research center to participate in a study. I am an agnostic who is praying for the success of the OMF and Dr. Davis's work.

10

Donor

Rating: 5

As the mother of a child with ME/CFS, I can tell you it is an horribly debilitating disease, which effects previously healthy people of all ages, and robs them of the energy to work, go to school, exercise, think, read, feed themselves, groom themselves, carry on social lives, etc.

Doctors and researchers know very little about it's etiology and have virtually no proven treatments. Research is desperately needed.

The Open Medicine Foundation has brought together a brilliant research team and is ready to tackle this disease with a well coordinated master plan. They have just begun a study looking for everything that could possibly be wrong in a small group of the most severely ill, those who are bed bound, cannot eat, speak, tolerate light or sound, etc. They are looking in this group first as it is likely to be the most efficient way to find abnormalities. Abnormalities are often most glaring in the most severely ill.

The Open Medicine Foundation holds the greatest promise for ending ME/CFS. If you are looking for a way to make a difference in this world, help the OMF! I have donated, I hope you will, too.

10 Penelope M.

General Member of the Public

Rating: 5

The OMF is carrying out research into ME/CFS, an illness that leaves 25% of the people with it bedbound.
Their first stage is to investigate these severely ill people who have rarely been studied because they are not well enough to attend research centres.

There are no widely accepted biomarkers for this debilitating illness, no approved treatments, and most of the research is funded by patients themselves, patients who often live in poverty because they are too ill to be employed.

Please support the OMF!
A lot of very unwell people are relying on them to produce change.

These top scientists are doing all they can to help thse disadvantaged people.

2

Former staff

Rating: 1

There is nothing "GREAT" about this. They are a hoax and any "discoveries" are totally anecdotal and made up.

10

General Member of the Public

Rating: 5

Please everyone knowledge is power when it comes to ME/CFS because so many sufferers can not be heard and are bed bound and literally in the dark . We have to spread awareness and the OMF is doing their part in making our voices heard and making it so we don't suffer in silence. While some of the medical community still doesn't fully understand the devastation this disease causes after suffering for 18 yrs since 16 yrs of age I can tell you it's a very real physical disease and I've lost everything and everyone! We need support from anyone including medical professionals, government, and nonprofits such as this one to help in saving over 4 million lives in the USA alone! Please do not ignore this disease or the work of the OMF because the life they save may be mine!

20

Donor

Rating: 5

The Open Medicine Foundation supports research, advocacy and awareness of "invisible" diseases such as Fibromyalgia and Chronic Fatigue Syndrome. These illnesses can have severe symptoms, including chronic pain, memory and concentration defects, and extreme physical debility. They affect millions of people, but are still poorly understood, difficult to diagnose, and have limited treatment options.

In part, this is because these diseases have defied traditional biomedical research methods for isolating their cause, such as identification of a viral agent or mutant gene.
These diseases also have a large social stigma, as the symptoms have minimal outward signs, and are often mistaken for mental illness or malingering. These factors have combined to create an environment where funding and support for this research is at an abysmal level. For example, the annual NIH budget for all Chronic Fatigue Syndrome-related research is $5 million annually. This is on par with research funding on areas like lead poisoning, or Hay Fever, and is 1/10th to 1/100th that of other diseases with similar incidence and social burden. As a result, the research that does exist is often conflicting, of low statistical significance (due to a limited number of patients that can be enrolled, or limited sample sizes that can be analyzed on a given grant budget), and poorly focused.

The Open Medicine Foundation is working to change all of that. Their scientific advisory board contains luminaries from universities such as Harvard and Stanford, and includes Nobel laureate James Watson among their number. These individuals have become involved due to the compelling intellectual challenge, the possibility of uncovering new mechanisms underlying disease, or because close friends and relatives suffer horribly due to these illnesses. Together they have outlined a focused, economical, well-designed series of projects using state of the art diagnostic techniques, rigorous analysis and large sample sizes to finally bring study of these diseases into the 21st century and give them the attention they deserve. Of particular merit are the clinical studies of "low hanging fruit" - treatment options which have had some success in the literature, but have only had limited numbers of patients studied to date. So are the tools they are building to generate and analyze data that patients and patient advocates can supply from anywhere they have an internet connection.

Truly stunning, however, is the ME/CFS Severely Ill - Big data study. The patients who are the most ill, and consequently are likely to have the highest levels of biomarkers for the disease(s), haven't been evaluated in previous studies, because constantly travelling to see physicians or give samples is too exhausting for them. Instead, sampling will be performed professionally AT THEIR OWN HOMES. The samples are then analyzed in incredible depth using existing state-of-the-art research labs developed by their collaborators. This eliminates the capital cost of instrumentation or fees from contract research labs, meaning they get this data for the consumables cost and man-hour time alone. The $1 million goal for this study was recently fully funded, thanks mostly to a couple of anonymous donors with very deep pockets.

If OMF succeeds in their mission, they will effectively double the current research budget on their own, and finally give patients and physicians an objective method of verifying presence of the illness. This is crucial for diagnosis, treatment, and the social validation so necessary for improving the quality of life of millions of people. Equally as important are their advocacy activities, making videos, supporting documentaries and working to re-categorize these diseases into a framework that allows both the public and physicians to take them seriously. Just ask a patient with any of these diseases how often they've struggled to get support and been told "You don't look sick" or "I'm tired all the time too, doesn't stop me."

I can't put into words how impressed I am with this Foundation, its activities and aims. I say this not only as a patient who has struggled to overcome Chronic Fatigue Syndrome and be a useful member of society since my early teens, but as a successful analytical biochemist with over a decade of experience in Life Sciences R&D. These people deserve your money.




1

Professional with expertise in this field

Rating: 2

A fairly new "nonprofit" with high aspirations but sometimes not very articulate studies. They seem to do huge studies but not be transparent at all about what their expectations or goals are of the studies.

10

Donor

Rating: 5

Open Medicine is helping bring awareness to a disease that is by far the least understood illness that can greatly affect a person's life. My 20 yr old son was diagnosed with this condition and no one in Houston knew what to do with it, how to treat it. We had to fly to California in order to get the proper treatment. This condition has completely altered my son's life- a valedictorian out of high school that now can only take 1-2 classes and can't socialize with friends due to his fatigue. There is still no cure and hardly anyone in our society understands it so it has a stigma that the patients do not deserve. Only through the work of institutions like Open Medicine can we get to a cure and better awareness. Thanks Open Medicine!

9

Donor

Rating: 5

These folks have identified an important medical problem that requires definition. Their plan proposes to employ the very latest scientific methods of discovery and to collect Big Data. The data will be subjected to highly sophisticated computer analyses to look for patterns. From those patterns, hypotheses will be derived. Experiments will be undertaken to test those hypotheses.

11

Donor

Rating: 5

I'm very pleased to have found the Open Medicine Foundation and their "End ME/CFS" work. At last, a chance to beat this insidious disease. My son has suffered from CFS for 12 years. He is 34 now, so he has lost the best years of his life.
It requires a concerted effort like this to make progress; the mainstream medical research organisations seem only interested in the high-profile diseases like Cancer and Heart disease.
I am happy to donate and hope that enough others will join me to defeat ME/CFS.

10

General Member of the Public

Rating: 5

The Open Medicine Foundation is working hard to move the science forward for ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) and other neuroimmune illnesses. I've had CFS for decades, and it's only in the past few years I've started to feel hope that the pathology and causes of this illness will be unravelled, in a great part due to organizations like the Open Medicine Foundation. They have an all-star lineup of researchers, and are using "Big Data" and sponsoring studies on both genomes and gene expression to try to figure out what's going on. I would love to see them get all the support they need to follow their vision on this research.

10

Donor

Rating: 5

My plea is on behalf of people who are severely ill with CFS. By severely ill, I mean formerly healthy people who can no longer walk or speak or feed themselves--and no one knows why. These people have been treated with contempt by most government research grantors for at least 30 years.

The OMF is the very first research group to understand that these extremely ill people are the ones who MUST be studied in order to find a group of biomarkers to distinguish their disease from other diseases. The OMF doesn't just give lip service to this idea. They are designing ways to send researchers into severe patients' homes to collect the five types of bodily fluids they will study. The OMF includes some of the world's best scientists, and my hope lies with them.

10

Donor

Rating: 5

The OMF has top scientists with a great research plan that is ready to move forward. When you donate to them your money goes directly to real science for a cure.

9

Client Served

Rating: 5

The OMF is aggressively searching for answers for Neuro-Immune illnesses. With a rock star Scientific Advisory Board that is led by Professor Ron Davis who is Professor of Biochemistry & Genetics, and Director of the Stanford Genome Technology Center at Stanford University it won't be long till major headway is made in understanding this area of science. This is a first class organization that desperately needs all our support! The beauty is there making a difference NOW in patients lives by offering cutting edge treatments.

9

Client Served

Rating: 5

OMF is providing hope for those who suffer from one of the least understood major diseases out there today. Their research on neuro-immune disease is cutting edge and collaborative which means that they are sharing information and building relationships within the neuro-immune disease research community so that the world can make advances faster and hopefully find a cure sooner. I also very much appreciate how they are working to build awareness and have greatly helped my daughter in finding ways to educate people on her disease which is so misunderstood. They have also helped our family find the resources and team of doctors that we need to support us through this disease.

9 Jamie82

Volunteer

Rating: 5

This charity is fantastic, the people behind it so inspirational and innovative problem solvers. Their plans to devise biomarker panels for Myalgic encephalomyeltis will start to bring about understanding of parthenogenesis that has been desperately lacking, subsequently likely helping to bring about treatments to give patients back their lost lives.

9

General Member of the Public

Rating: 5

Open Medicine Foundation offers open scientific collaboration, expertise, courage, and endurance. This is what M.E. patients, including me, have been awaiting for decades. One can only hope that the NIH wakes up and realizes that this work needs to be fully funded. Will more children, adults , and caregivers have to lose their lives to this disease while at the same time being asked to provide evidence that they are sick? I hope not, and I hope anyone who reads this will support the Open Medicine Foundation.

9

Client Served

Rating: 5

As a patient, to say I'm grateful for the work of the Open Medicine Foundation (OMF) is an understatement. Members of the OMF's scientific advisory board comprising world-renown researchers, including two Nobel Laureates, are "...contributing their time, experience, connections, and brilliant minds to ending ME/CFS and the suffering it causes". Thank goodness, because ME/CFS patients like me need this caliber of scientists to work on our behalf and move knowledge of this disease forward in the near-absence of funding or support by the US government.

Members of the OMF Board are equally dedicated. Linda Tannenbaum, the Executive Director, is a parent of a patient. She and others successfully raised funds needed for Phase One of the End ME/CFS project. Please consider donating to the OMF for Phase Two.

8

Donor

Rating: 5

This non-profit organization is simply our best hope! A bigwigs class is ready to mobilize for us, ME sufferers, dying patients in our beds, living dead ... They only needs the funds ... that NIH still refuse to give ! ME Research is no experience subsidies, while we are millions in the world to suffer! Wordwilde, there is almost only the OMF for helping us, so please, consider this organization, we need so much OMF and their work! (sorry for my poor English)
A French ME Sufferer

12

General Member of the Public

Rating: 5

I am an ME sufferer. I am housebound and invisible. The work the OMF is doing is the only thing giving me hope in a very hopeless situation. Thank you from the bottom of my heart!

11

Professional with expertise in this field

Rating: 5

This is one of the few organizations undertaking real scientific research into myalgic encephalomyelitis and other poorly understood neuroimmune diseases. ME patients have been neglected by the federal government's research funding and healthcare agencies for thirty years. That is starting to change now, largely thanks to OMF and its stellar scientific advisory board. There is now at least a glimmer of hope for patients with this truly horrible, debilitating disease.

12

Donor

Rating: 5

Having suffered from severe ME unable to feed or wash myself, a charity that fights for funding and research is one of the few hopes we severe ME sufferers have left.

16

Professional with expertise in this field

Rating: 5

Fundraising for the best research ever proposed to investigate and end ME/CFS.