What is Ron Davis' financial relationship with OMF?

[gbells]

I've noticed that Dr. Ron Davis doesn't respond to ideas from patients, only researchers. I sent him an email about immunotherapy for ME that was never responded to. Also, I think his ME foundation OMF demands all patent rights and ownership be surrendered which it very intimidating. Does he take a salary from the foundation? Does he have any ownership of it and/or agreement of a percentage of revenue derived from patents? Where are their financials?

I sent a brief discussion of the immunotherapy approach I am working on in the email that went unresponded to. I won't waste time sending detailed information to people who show their lack of interest by not even bothering to respond to an email. Also, I have some concerns about the ownership rights post-research in their agreement. Surrendering ownership to OMF will just deter a lot of self-experimenters who may discover new knowledge.
@Janet Dafoe

 

[Quilp]

I've noticed that Dr. Ron Davis doesn't respond to ideas from patients, only researchers. I sent him an email about immunotherapy for ME that was never responded to. Also, I think his ME foundation OMF demands all patent rights and ownership be surrendered which it very intimidating. Does he take a salary from the foundation? Does he have any ownership of it and/or agreement of a percentage of revenue derived from patents? Where are their financials?

I sent a brief discussion of the immunotherapy approach I am working on in the email that went unresponded to. I won't waste time sending detailed information to people who show their lack of interest by not even bothering to respond to an email. Also, I have some concerns about the ownership rights post-research in their agreement. Surrendering ownership to OMF will just deter a lot of self-experimenters who may discover new knowledge.
@Janet Dafoe

I don't see what you see, perhaps I don't know what you know, but I see a father with all the love in the world for his son. I see tiredness etched across his face, a brilliant man surrending his own health and well being so that others might one day have a life worth living.
What a remarkable human being. To have a father, a friend like Ron Davis. Who could have wished for more.

 

[gbells]

@Qlip According to @Janet Dafoe people expressed concern that OMF's hasn't generated much progress in finding a cure for ME.

Last time on Ativan I was told that many of you are frustrated with the speed of the progress Superman and his team are making...

https://forums.phoenixrising.me/thr...study-covid-19-and-me-cfs.80161/#post-2275996

 

[wabi-sabi]

What a remarkable human being. To have a father, a friend like Ron Davis. Who could have wished for more.

Well said. Dr. Davis and his work is one of the things that give me hope in this illness.

 

[gbells]

In my opinion he should be researching immunotherapy. But even if he was, people with existing approaches won't want to give up their ownership rights nor should they have to if it is a nonprofit organization. I can understand a fair share of profits for the amount of research done but not total loss of ownership. I can't agree with those terms.

 

[Diwi9]

Charitynavigator.com gives OMF a 100 out of 100 rating. The expense ratio for OMF has improved every year. The last reporting it offers is for FY2018. OMF had about $5.5 million for programs, ~$150,000 for administrative costs and $173,000 on fundraising. https://www.charitynavigator.org/ein/264712664#program-expense-content. I don't see compensation built into those expenditures, it looks more like costs.

My personal experience with Ron Davis is that he is working all the time. There is no way the hours he's putting towards OMF (fundraising/networking/organizing) and his research through his lab at Stanford are financially compensated in full.

 

[gbells]

Charitynavigator lists one of the board members as not-independent. Their business model is probably take no profits until they sell something. At that time the board member could be compensated through royalties.

I once knew a "nonprofit" school (Life University in Marietta GA) that paid it's founder-president (Sid E. Williams) a salary of $1 million per year. His family (wife, children) were also renumerated a huge amount of money as salary.

[Welch Suggs, “At Life U., an Omnipresent President Pushes the Institution and Its Specialty,” The Chronicle of Higher Education (October 8, 1999) ]

I'm not saying Dr. Davis shouldn't be compensated for work done but it doesn't seem even handed. I really want to see ME get cured but I wouldn't work with him under those terms.

 

[Diwi9]

Ron Davis is not on the OMF Board of Directors. He is the Director of the Scientific Advisory Board. If you want your questions more fully answered contact OMF. I don't know who else would know what contingencies/rights/royalties are connected with OMF-based grants. There are a lot of unscrupulous non-profits, I don't think OMF is one of them, but respect your interest in these questions.

 

[gbells]

Ron Davis is not on the OMF Board of Directors. He is the Director of the Scientific Advisory Board. If you want your questions more fully answered contact OMF. I don't know who else would know what contingencies/rights/royalties are connected with OMF-based grants. There are a lot of unscrupulous non-profits, I don't think OMF is one of them, but respect your interest in these questions.

When he starts answering emails perhaps I'll try.

 

[Rufous McKinney]

Where are their financials?

When research papers are published, there is now this Conflict of Interest section that should disclose if there are financial benefits that might bias the publication (I assume thats why this is now commonly disclosed).

I would think there is some public disclosure on the NGO finances.

If 2% of the world population has ME, how many random emails and suggestions can a busy scientist pay attention to? That could rapidly snowball into an unmanageable situation. They need to remain focused to stay on track.

 

[wabi-sabi]

When he starts answering emails perhaps I'll try.

As @Diwi9 said, Dr. Davis is not on the OMF board of directors and thus his duties most likely don't include the questions you want answers to. I'm sure if you email an administrative rather than a research person they will be able to address your concerns.

Myself, I would far prefer Dr. Davis focus on the research he is so good at than get distracted by administrative matters.

If 2% of the world population has ME, how many random emails and suggestions can a busy scientist pay attention to? That could rapidly snowball into an unmanageable situation. They need to remain focused to stay on track.

Exactly! I know we all want research updates yesterday, but they need to be able to actually get that research done.

 

[gbells]

I emailed the OMF Board of Directors the questions.

 

[Janet Dafoe]

Ron Davis‘s salary is paid by Stanford. He is a professor at Stanford. He gets no personal money from O MF. He is the one, along with his scientific advisory board, who decides how the money is spent on scientific research.

Ron gets hundreds of emails every day! He answers many patient emails and talks to many patients over the phone. I’m sorry he seems to of missed yours. It works the best if you CC me and I can make sure he sees it. Many people expect immediate responses from him. It is unreasonable. He is spending most of his time desperately trying to do the science to find a treatment and cure for this disease. I’m sure that is what he would want. Further, he is not the person to do immunotherapy work. He works closely with Mark Davis who is a world famous immunologist and they are making progress commensurate with the funding they have.

We have just finished a very productive 4-day zoom conference on the molecular basis of ME/CFS. With over 80 very prestigious knowledgeable amazing scientists from all over the world. This time he included a few more clinicians and a few patients, some of those made presentations. Ron Davis is the most open minded person you would ever care to meet. It hurts my heart to see all this negative stuff out there about him. We are all very anxious to find answers. I think it would be good not to attack the very people who are trying their darndest to help you and actually are your best hope. Ron’s whole focus is to try to do the work as efficiently and fast as possible with the resources he has. Maybe you’d like to help with fundraising. With more money it would go a lot faster.

All intellectual property derived from Ron’s work is owned by Stanford. Any patents resulting from this work are owned by Stanford.
This is very important because Ron wants to make sure that some company does not get a patent from his work and then charge exorbitant amounts for whatever the thing is. He make sure that things are available at the lowest price possible. It’s one of his biggest criteria.

 

[Rufous McKinney]

Thank you @Janet Dafoe , Dr. Davis, Stanford University and OMF- for everything you do each day to help us.

 

[lenora]

I have said, and keep saying, that the groups that end up with a lot of govt. funding are those who start their own fundraising themselves. It has worked for the MS Society, the AIDS Group. Now their war chest is full of Govt. money...b/c they proved that they were willing to raise funds on their own first and foremost. As a matter of fact, AIDS is given more government money than any other group today.

The OMF is very new, it has some extremely interesting people, cases, researchers and doctors alike who are willing to go the extra mile to help others. That's where it begins. I agree with Mrs. Dafoe (& I've followed this story for years). I'm sure that Dr. Davis& Mrs. Dafoe would like to be luxuriating in retirement but can't because he has this last challenge to meet. Mrs. Dafoe's quite right when she says that some of the remarks are hurtful (I'm paraphrasing here). Please, come up with an idea for us to raise funds and put ourselves "out there."

I understand where scientific patents are worth a fortune. Call the Open Medicine Foundation....send them an e-mail, and find out about the patents and who benefits from them. Perhaps everything goes to the OMF itself. We've only just had decent researchers for a few years....in the early years (my years) there was nothing? I hope for the sake of all of you, that some answers will soon be forthcoming. ME is a very complicated illness, personally I don't believe there will only be one avenue to go down, there are streets all over. Please contact the OMF about patents....and then trust, that there will be an answer someday, but you'll never know when.

 

[Janet Dafoe]

OMF is not getting any patents on this! They are a fundraising organization. The science gets done at universities who own all the intellectual property. The universities get any patents that come out of any of this. Ron has over 50 patents that he’s gotten for various things over his career . It isn’t making him rich. Stanford and the departments get most of the money. Stanford does not relinquish control. If a company wants to license the patent and wants to have all the control, then they don’t get the license. Ron does his best to make sure that companies cannot license and then overcharge people for the stuff he’s done. There’s nothing nefarious going on here.

 

[Janet Dafoe]

@Qlip According to @Janet Dafoe people expressed concern that OMF's hasn't generated much progress in finding a cure for ME.


https://forums.phoenixrising.me/thr...study-covid-19-and-me-cfs.80161/#post-2275996

This was written by Whitney.

 

[gbells]

This was written by Whitney.

Thank you for the response Janet. That settles the question on royalties.

All intellectual property derived from Ron’s work is owned by Stanford. Any patents resulting from this work are owned by Stanford.
This is very important because Ron wants to make sure that some company does not get a patent from his work and then charge exorbitant amounts for whatever the thing is. He make sure that things are available at the lowest price possible. It’s one of his biggest criteria.

I don't see why price would matter since an approved therapy/cure would be covered by insurance anyway. Letting a pharma co and inventors have a percentage of the profits is a good way to get funding and the usual and customary practice.

As I said before, if Stanford is forcing inventors to sign away any profit for their work just so the school can take it all that is going to discourage people from working with you. I can't work with you if there is no future renumeration potential on my own ideas that I have spent a decade working on. I have to earn a living too eventually.

As for funding, I'm sure the billionaire 1% controlling and owning 75% of the USA must have their $5.2 billion per year NIH grants for boutique spa medicine aging research (12.5% of the entire NIH 2020 budget of $41.6 billion). Who are ME patients to deprive 602 US billionaires of $200 million in federal tax dollars that could be used for their extended lifespan and wrinkle cream research just so 2.5 million permanently disabled ME patients (NIH grants only $15 million or 0.04% of the NIH budget) could eventually recover and not have to die from cancer and suicide (the two major causes of death for ME patients)? Nobody I know wants any of these fat cats to be around any longer than their natural lifespans (picture the animated heads in inverted fishbowls from Futurama).

Seriously, ME is funded less than teenage pregnancy.
What we need are protests to get NIH to pony up the money.

And NIH needs to develop vaccines for EBV, HHV6 and CMV so we can prevent kids from getting ME in the first place. That should be a top priority since so many of us have them as several viral coinfections.

https://report.nih.gov/categorical_spending.aspx

Anyway, if you want to have a look at what I can do now with immunotherapy review the inflammation reduction photos in my blog and compare that to your results and let me know how you guys are doing.
https://forums.phoenixrising.me/blog-articles/blog/self-experimenting-a-new-me-treatment.37056/

 

[IThinkImTurningJapanese]

I don't see why price would matter since an approved therapy/cure would be covered by insurance anyway.

Good luck.

 

[gbells]

Further, he is not the person to do immunotherapy work. He works closely with Mark Davis who is a world famous immunologist and they are making progress commensurate with the funding they have.

I looked at his expertise. He specializes in T-cell molecular binding. This is only one small part of the entire apoptosis process. Medical cancer immunotherapy has this emphasis and it has no applicability because the aforementioned viruses have multiple apoptosis checkpoint blockers inhibit it. So even if you give someone GcMAF so they can make antibodies you still have to figure out a way to get around the apoptosis blocks and kill the cell. I feel like you are on a molecular wild goose chase trying to find a silver bullet and not seeing the problem in its entirety. Moreover, since there are several viruses in play you have to develop customized treatment for the viruses that are actually present inside the cells.

Gene editing seems a good research direction, but it will probably take time. If scientists can figure out how to increase the numbers of base pairs they could edit out to 14,000 you should be able to just prime delete the viruses out and degrade the fragments somehow which would be great because then you wouldn't have to deal with severe apoptosis pain and inflammation and the cell would revert back to its original state. I wonder where Stanford is with that. I have no idea how long it will take for them to accomplish it. If I were NIH I would fund prime editing for large base pair chains and new vaccines for ME viruses until somone can show efficacy for say an apoptosis blocker.

But given the big improvements some ME patients see treating individual chronic viruses like enterovirus and EBV with antivirals it seems this is the direction with the most promise and the shortest time to research (apoptosis inducers). There is no point re-inventing the wheel if you just have to tweek nature a bit chemically to get the result you need.