Help with raising funds for Prof. Lipkin's study

[dannybex]

It's my understanding that Lipkin and others now have plenty of funding, thanks to billionaire investor Glenn Hutchins, who's son has CFS:

https://www.facebook.com/photo.php?...a.10150589792146095.443635.57430136094&type=1

"

Glenn and his son hit the same road blocks we all do when we were diagnosed with ME/CFS, so Glenn decided to build a bridge over those blocks by ponying up close to $15 million to buy the services and interests of the world’s BEST ME/CFS researchers, virologists, and other medical experts that all the money in the world could buy. One of them was the brilliant and lauded virologists, Dr. Ian Lipkin, who you have probably seen on the cover or one or another magazines. He is a virus hunter. And he's the best one in the world.​

"​

 

[Nielk]

It's my understanding that Lipkin and others now have plenty of funding, thanks to billionaire investor Glenn Hutchins, who's son has CFS:

https://www.facebook.com/photo.php?...a.10150589792146095.443635.57430136094&type=1

"

Glenn and his son hit the same road blocks we all do when we were diagnosed with ME/CFS, so Glenn decided to build a bridge over those blocks by ponying up close to $15 million to buy the services and interests of the world’s BEST ME/CFS researchers, virologists, and other medical experts that all the money in the world could buy. One of them was the brilliant and lauded virologists, Dr. Ian Lipkin, who you have probably seen on the cover or one or another magazines. He is a virus hunter. And he's the best one in the world.​

"​

I think that this is what funded the Lipoin study so far but, I guess there is not enough to go forward?

 

[Dolphin]

It's my understanding that Lipkin and others now have plenty of funding, thanks to billionaire investor Glenn Hutchins, who's son has CFS:

https://www.facebook.com/photo.php?...a.10150589792146095.443635.57430136094&type=1

"
Glenn and his son hit the same road blocks we all do when we were diagnosed with ME/CFS, so Glenn decided to build a bridge over those blocks by ponying up close to $15 million to buy the services and interests of the world’s BEST ME/CFS researchers, virologists, and other medical experts that all the money in the world could buy. One of them was the brilliant and lauded virologists, Dr. Ian Lipkin, who you have probably seen on the cover or one or another magazines. He is a virus hunter. And he's the best one in the world.
"

I believe this is the money already invested.

Unfortunately it's not enough (Ian Lipkin only got a fraction of it, and most of it was presumably used up on other parts of the study:

We have the funding to do approximately ten percent of what’s needed. So again, I re-emphasize the fact that the budget is really inadequate to do this type of research. It is extremely expensive research. And it’s probably inappropriate for me to be passing the hat, but that is precisely what I’m doing.

 

[Firestormm]

omg.did this just happen!

Nope. This was the original source of funds for the establishment of the Chronic Fatigue Initiative.

See Science Insider: Here Sept. 2011

Wall St. Journal: Here Sept. 2011

Also mentioned by Lipkin in his broadcast are the Evans Family Foundation (and while I wasn't able to find out as much about their involvement (i.e. motives) I was aware of for Hutchins; I noticed they are supporting the Kogelink Open Medicine Institute: Here May 2013. But, am not sure how they fit with the CFI.

Anyway, all good stuff and very much appreciated; though I don't suppose $10 or even $15 million lasts for very long when working on large and expensive projects: but what a team of collaborators at CFI!

 

[dannybex]

I think that this is what funded the Lipoin study so far but, I guess there is not enough to go forward?

Perhaps, but certainly there must be a lot more where that came from.

I would think it would be far, far easier for any doctor or research institute to raise additional funds from a source like this (who no doubt has other extremely wealthy friends), rather than the measly amounts we could possibly donate.

Plus, I would assume Mr. Hutchins is still very interested in helping if his son is still sick.

???

 

[Dolphin]

Perhaps, but certainly there must be a lot more where that came from.

I would think it would be far, far easier for any doctor or research institute to raise additional funds from a source like this (who no doubt has other extremely wealthy friends), rather than the measly amounts we could possibly donate.

Plus, I would assume Mr. Hutchins is still very interested in helping if his son is still sick.

???

But one might also assume that Dr. Lipkin has communicated to them he needs more money.

But it is an unusual position we find ourselves in to have such possible support.

 

[dannybex]

But one might also assume that Dr. Lipkin has communicated to them he needs more money.

But it is an unusual position we find ourselves in to have such possible support.

I agree. Hopefully they're in communication, and also hope that Hutchins is talking with other docs and researchers as well, including environmental medicine specialists.

 

[Dolphin]

I agree. Hopefully they're in communication, and also hope that Hutchins is talking with other docs and researchers as well, including environmental medicine specialists.

Following reading this message, I checked and I see from another very recent thread you said:

I agree Erik, that investigators should definitely be looking at enviromental issues, including and perhaps especially mold. They're focusing way too much on bacterial and viral infections that are extremely common in the general population.

It seems to me this might partly explain your lack of enthusiasm for trying to raise money for Dr. Lipkin.

 

[dannybex]

Following reading this message, I checked and I see from another very recent thread you said:

It seems to me this might partly explain your lack of enthusiasm for trying to raise money for Dr. Lipkin.

Sorry, but that's just not true. I just think it's odd that patients, the majority with little money to donate, should worry about it when there are clearly others who can easily fund this research.

It also seems like there are other components besides viruses that may be causing the immune dysfunction that may be keeping us ill, like the study that showed mold exposure in something like 93% of ME/CFS patients and the fact that environmental toxins are connected to other chronic, disabling illnesses like Parkinson's, cancer, etc..

For example, Washington State, where I live, has the highest incidence of multiple sclerosis in the country. And more cases in eastern Washington -- farming country -- where there is a higher incidence of pesticide use.

http://www.ncbi.nlm.nih.gov/pubmed/21601587

I just think it's a mistake to ignore other factors and hope that Lipkin and others will broaden the scope of their research.

 

[Dolphin]

I just think it's odd that patients, the majority with little money to donate, should worry about it when there are clearly others who can easily fund this research.

I'm personally tired of waiting around for research to happen. There are lots of ways to make it happen. Waiting for rich people to pay for it isn't the only way to make it happen.

There are tens of millions of people affected with this illness worldwide, millions in "developed"/"first world countries and that then extends to tens of millions with close relatives with the illness. There is plenty of potential for these families to raise significant money through donations and fund-raising if they take some ownership of the problem.

I've come across plenty of people who have spent quite a lot on speculative therapies during the course of their illness. People often do have some money they could give - I'd be happy if they gave to research 1% of what they spend on speculative therapies.

I'd certainly love if the Hutchins family give more. But waiting for multimillionaires to donate is not the only way money can be raised. My life is passing me by - 19 years severely affected. I've seen lots of people waiting around for something to happen. Up till a few years ago, there was really relatively little money being raised worldwide. Lots of people wondering why progress wasn't being made. We can make a difference if we put our minds to it.

And I think if there is more talk about donating/raising money, more of the wealthy people will like also give.

 

[vli]

Perhaps, but certainly there must be a lot more where that came from.

I would think it would be far, far easier for any doctor or research institute to raise additional funds from a source like this (who no doubt has other extremely wealthy friends), rather than the measly amounts we could possibly donate.

Plus, I would assume Mr. Hutchins is still very interested in helping if his son is still sick.

dannybex, I totally agree and these were all thoughts that crossed my mind when I listened to the call. But then why on earth did Lipkin implore three times in like 20 min for us to pressure our gov and write to our Congressmen? I'm guessing he's already been rejected for grants he's tried to apply for. I don't know how cosy a position he's in with the Hutchins family itself to ask them for more funding for his pathogen study. It's easy to forget (I did) that the CFI's $10mil is divided between FIVE programs (and he didn't tell us how much his study was getting. Compare this with: Dr Enlander got $1 million from an anon. donor for his study into PEM (a heck of a lot of money to study PEM in my very humble opinion!!!!!!!!!)).

Sasha: I asked on another thread who I should contact regarding the subject of this thread and a member told me to contact you. Basically I'm a complete novice at these things but feel strongly that Lipkin is one of those few people I should try to explore this unfamiliar area of fundraising for--he told us all he only had 10% the funds that he needed. May I ask how one goes about this or are there even other members here I should contact?

 

[Sasha]

[Sasha: I asked on another thread who I should contact regarding the subject of this thread and a member told me to contact you. Basically I'm a complete novice at these things but feel strongly that Lipkin is one of those few people I should try to explore this unfamiliar area of fundraising for--he told us all he only had 10% the funds that he needed. May I ask how one goes about this or are there even other members here I should contact?

Hi vli - I agree this is an important question and I don't know how to set about this in a US context. I've contacted a few US advocates here on PR to suggest getting in touch with Dr Lipkin to see how we can help him to help us and perhaps getting a letter drafted for people to send to their congress reps. It's going to need targetting the NIH, I think, possibly via congress reps and that will need some planning and thinking about. I'm hoping someone with the right background and contacts is going to pick this up - if they do, I'd certainly be interested in helping to get the message out for some kind of mass action.

By all means ask others - my efforts might come to nothing and the more of us trying to get something going, the better. In terms of private donations, the first thing we need is a fund to which to donate and again, I think someone needs to be discussing with Dr Lipkin how to set that up.

 

[vli]

Hi vli - I agree this is an important question and I don't know how to set about this in a US context. I've contacted a few US advocates here on PR to suggest getting in touch with Dr Lipkin to see how we can help him to help us and perhaps getting a letter drafted for people to send to their congress reps. It's going to need targetting the NIH, I think, possibly via congress reps and that will need some planning and thinking about. I'm hoping someone with the right background and contacts is going to pick this up - if they do, I'd certainly be interested in helping to get the message out for some kind of mass action.

By all means ask others - my efforts might come to nothing and the more of us trying to get something going, the better. In terms of private donations, the first thing we need is a fund to which to donate and again, I think someone needs to be discussing with Dr Lipkin how to set that up.

Hi Sasha, thank you so much for this... so for the rest of us, can all we do now is to wait for those US advocates that you've contacted to write you back (I see jspotila says she's too busy to help with this right now--I don't know who else on PR has such experience?).

 

[vli]

Unfortunately it's not enough (Ian Lipkin only got a fraction of it, and most of it was presumably used up on other parts of the study:

Yes, PLEASE remember that $10 or $15m (I say 10 or 15 because the figure I read at other places was 10, and here it's 15) is divided btwn these five programs. http://cfinitiative.org/research-programs/

 

[dannybex]

I'd certainly love if the Hutchins family give more. But waiting for multimillionaires to donate is not the only way money can be raised. My life is passing me by - 19 years severely affected. I've seen lots of people waiting around for something to happen. Up till a few years ago, there was really relatively little money being raised worldwide. Lots of people wondering why progress wasn't being made. We can make a difference if we put our minds to it.

And I think if there is more talk about donating/raising money, more of the wealthy people will like also give.

Good points Dolphin. I just read about the study -- hadn't listened to the call that vii spoke about above -- so I had no idea Lipkin was asking patients for help.

Believe me, I want answers too. I've been sick for 15 years, the last 4 quite severely, and certainly don't mean to suggest that we should just lay around waiting. Just thought, perhaps idealistically, that those who can afford to at a much higher level, should gather their friends and associates, and do so...

 

[Dolphin]

I'd certainly love if the Hutchins family give more. But waiting for multimillionaires to donate is not the only way money can be raised. My life is passing me by - 19 years severely affected. I've seen lots of people waiting around for something to happen. Up till a few years ago, there was really relatively little money being raised worldwide. Lots of people wondering why progress wasn't being made. We can make a difference if we put our minds to it.

And I think if there is more talk about donating/raising money, more of the wealthy people will like also give.

Good points Dolphin.

Thanks.

I just read about the study -- hadn't listened to the call that vii spoke about above -- so I had no idea Lipkin was asking patients for help.

Ok. Best of luck.

 

[Nielk]

vli - There is a facebook group for ME/CFS fundraising. I'm not sure if you are aware of it. You might want to post there and see if they can advise/help you on this project.

 

[Dolphin]

Yes, PLEASE remember that $10 or $15m (I say 10 or 15 because the figure I read at other places was 10, and here it's 15) is divided btwn these five programs. http://cfinitiative.org/research-programs/

I always thought it was $10 million myself. Do we have a source saying $15m?/does the ProHealth post a link to anything mentioning the $15 million?

 

[vli]

Thanks @Nielk--would you know where it is? I am searching for it anyway.

 

[Dolphin]

Thanks @Nielk--would you know where it is? I am searching for it anyway.

https://www.facebook.com/groups/115200951912652/