Help with raising funds for Prof. Lipkin's study

[Firestormm]

@Wally

As I said, I would be personally interested as this - generally - is an area I am interested in also. So if you can discover more about OMI's policy in this regard, I'd like to read about it. Thank you.

We have a great many threads on this forum from members advertising the latest fundraising campaign or of ones tied to research. I think if Phoenix Rising were to perform 'due diligence' on all studies and promotions prior to permitting it take place, we might as well rule, no promotions; and that would be a step too far I think.

Ideally, if Phoenix Rising were supporting and recommending a campaign or project, then there is perhaps more of a need for some examination to be performed: especially if donated funds were to be committed; but articles written are not endorsements from Phoenix as a charity and neither are threads.

Articles and threads are written and posted on the website by individuals and are generally done for information, to alert the wider public to such-and-such a project; and should not be seen as endorsements. If someone comes to me or to Mark with a draft for an article they would like to see published, we don't carry out a quality control check on the project.

In the past year alone, for example, I can recall articles featuring the Norwegian and UK Invest in ME fundraising campaigns for separate Rituximab trials - the former had a proposal in place, but the latter has yet to have one from the scientific team. However, IiME have raised significant funds in preparation for a proposal, and in the hope that the proposal passes peer review.

@Mark Would you like to add something to the above discussion?

 

[Wally]

@Wally

As I said, I would be personally interested as this - generally - is an area I am interested in also. So if you can discover more about OMI's policy in this regard, I'd like to read about it. Thank you.

We have a great many threads on this forum from members advertising the latest fundraising campaign or of ones tied to research. I think if Phoenix Rising were to perform 'due diligence' on all studies and promotions prior to permitting it take place, we might as well rule, no promotions; and that would be a step too far I think.

Ideally, if Phoenix Rising were supporting and recommending a campaign or project, then there is perhaps more of a need for some examination to be performed: especially if donated funds were to be committed; but articles written are not endorsements from Phoenix as a charity and neither are threads.

Articles and threads are written and posted on the website by individuals and are generally done for information, to alert the wider public to such-and-such a project; and should not be seen as endorsements. If someone comes to me or to Mark with a draft for an article they would like to see published, we don't carry out a quality control check on the project.

In the past year alone, for example, I can recall articles featuring the Norwegian and UK Invest in ME fundraising campaigns for separate Rituximab trials - the former had a proposal in place, but the latter has yet to have one from the scientific team. However, IiME have raised significant funds in preparation for a proposal, and in the hope that the proposal passes peer review.

@Mark Would you like to add something to the above discussion?

Firestorm, Mark and/or other PR Board Members,

I think it is great that the Forum is available for individuals to share information with the ME/CFS community and I would not expect that the Board would vet every posting where an individual is making a suggestion where patients or other interested parties could make a donation to support ME/CFS research. However, I am wondering if their might be some way that a post that solicits or encourages the ME/CFS community to give money for a particular cause could include some type of disclaimer or reference to advise the Forum community of the type of questions/research that they or someone else might want to do before making a final decision to part with their money. I am thinking of some type of standard statement with perhaps a link that members posting this kind of information could just cut and paste into the end of their post. If they forget to include the disclaimer/reference then the Forum moderator staff could just add this in to the post.

Just simply throwing out an idea to see if we can find ways to be a more savvy community of patients looking out for each other to make sure enthusiasm does not trump the need for a thoughtful, informative approach to where our resources are directed.

Wally

P.S. I will ask OMI if they would be willing to provide additional information about how they determine what research projects to support and if they have any suggestions as to how patients make this determination for themselves.

 

[vli]

@Wally But I do agree that more information about this study would be preferable, and hopefully will be obtained. We are hoping to write (and perhaps launch funding for) this one in 2014 with an interview perhaps with those concerned. I myself have concerns about the expressed enthusiasm for the microbiome. I don't think it will be as easy as perhaps some believe or as fruitful either.

The Director of Development at Major Gifts at Columbia wrote me eight days ago saying "I am following up to see if you need any additional information from me". This was after the info here that she sent me after a request on my part for more info on the study.

vli if you can make an article out of this - perhaps referring to the research the team are engaged in and what the funds will be used for - let me know and we can publish on the Home page etc. with links to the fundrasing website.

Seeing firestormm's second quote I realise I don't think that I can even make an article out of what we know. At least nothing that's not already in PR's article on Lipkin's study. And Ms Schwartz is asking if there is more info we want from her. I feel at this point one should not reply until one has a list of specific questions about the study, almost like an interview.

I would really, really appreciate some help here. I know i was the one who started all this but right now I am so exhausted from relocating here, I can barely think. I understand there is no rush, but I don't want to delay replying Ms Schwartz for too long and anyway it is better that I ask for ppl's ideas now so i can hear more of them.

Also I won't deny that I've become more confused as to what next step to take after reading Ryan Prior's post. Should we still go for Indiegogo, or just ask Ms Schwartz directly how much of the donations made at the Columbia link (https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636) go to overheads (and ask ppl to give there)?

When fundraising for our documentary or for our non-profit, I think we get a slightly different set of questions. But overall, when fundraising for movies, research, or building houses the main thing to keep an eye on is organizational overhead. My dad is also in the non-profit sector so we get a good bit of advice from him as well. Basically a non-profit usually should have no more than 25% of the donations going to overhead. At least 75% should go directly to program expenses (building houses, doing research, etc.). It's better if 85% is direct program expense, which is what we try to do with Blue Ribbon Foundation.

In the case of Columbia, if you use the link the University is showing, I think people might want to know if that money is going directly to Lipkin's lab. Some of course would have to go to the overhead of running their development office or the administrators who help run Lipkin's office. It can't/won't/shouldn't go completely 100% to his research because he can't do his thing unless the entire University is functioning.

When using Kickstarter or Indiegogo (Indiegogo can work for medical research, but Kickstarter is for funding art or business products) you also have to just be aware that those sites take a cut of the funds. Kickstarter took about 5% from us for our movie and then another 2.5% for the credit card processing. Indiegogo will actually take more, perhaps around 10% I think? So if you want to respect the rule of 75-85% of funds raised going directly to the research, you have to be aware that Indiegogo will eat up 10% right off the bat. And you may face additional percentage cuts elsewhere along the pipeline to get to Lipkin's lab. But no matter which fundraising service you use, you'll be facing some sort of overhead, which is normal in the non-profit world. Especially when you're trying to raise big money.

 

[vli]

@Firestormm , @Mark...

I went ahead and emailed Ms Schwartz the following questions. After I sent them I wasn't sure if they would be fine with PR so I hope it's OK that I run them by you here...thanks for being patient!

"In fact the website where most of us are discussing this is http://phoenixrising.me/ and we are trying to find out if Dr Lipkin would agree to giving an interview about the fatigue study on that site, as that would certainly boost the number of donors who would be more encouraged to give if Dr Lipkin could explain why his work is so crucial to CFS and deserves much more financing than it receives now.

Because crowdfunding websites often take 10% of the funds raised we would also like to know approximately how much (%) of the gifts, given at the link that you had given me, go to the overhead of running Dr Lipkin's office. This would help us decide whether to use a crowdfunding site at all."

 

[Mark]

That's fine vli, you haven't said anything there that represents this as being 'on behalf of PR' in any way, so no real problems that I can see.

 

[vli]

Some answers I got from Ms Schwartz:

"I will ask Dr. Lipkin’s administrator, what % of the funds raised go towards overhead.

Dr. Lipkin would be happy to give an interview about the Chronic Fatigue study on phoenix rising. Please let me know how you want to proceed."

Now I don't know how interviews work on PR--do I draw up a list of questions, PR vets them, and the interview is conducted by PR? @Firestormm, @Mark -- how should I proceed??

 

[Firestormm]

Hi @vli we can work on this together if you like and I'll contact you via 'conversation'. It would be very good indeed to interview Lipkin. An excellent result signore signorina/signora and I tip my hat to you

 

[Hope123]

Hi @vli we can work on this together if you like and I'll contact you via 'conversation'. It would be very good indeed to interview Lipkin. An excellent result signore signorina/signora and I tip my hat to you

If you interview Lipkin, ask him how much he thinks he would need to operate a ME/CFS Center of Excellence each year at Columbia for 5 years. Centers of Excellence have been suggested by the US CFS Advisory Committee multiple times over the last decade but the response from the government has always been there is not enough money while other topics get funded. Centers are usually based at universities scattered across the country and would provide research, patient care, and education of health professionals/ public.

INIH recently devoted $100 million for Autism Centers of Excellence and $96 million total for 5 years for data analysis centers. $60 million over 5 years for autoimmunity centers. If those numbers sound big to you, recognize we're not talking about one person's salary or purchasing a house (which is the most expensive thing most people poesses): for comparison, look at the prices of ONE military plane in the link below - which can cost $30 million or up see the TIME link. My father retired from aerospace engineering and part of his work was in defense. While a strong US military is important, sometimes we go overboard with the spending.

Don't "undervalue" ME/CFS research -- we've been neglected for 3 decades - and findings in ME/CFS could end up being applicable to other medical conditions or reveal things about basic human biology we don't know about yet. Breakthroughs can happen from exploring the unknown.

http://www.nih.gov/news/health/sep2012/nichd-04.htm

http://www.nih.gov/news/health/jul2013/nih-22.htm

http://content.time.com/time/photogallery/0,29307,1912203,00.html

 

[biophile]

Some tips on how to phrase a Kickstarter project:

http://www.sciencedaily.com/releases/2014/01/140114114141.htm

 

[Firestormm]

@Hope123 You don't have to convince me I am afraid the interview was done last week and it's being written up now. Perhaps something we can raise next time? Thanks.

@biophile thanks. I have to do some bringing of people together with regard to the campaign itself and will recommend your link to all those who volunteer to be involved. Though this side of things is still in its' infancy. We really need help but I will be contacting those who have made big in-roads with these kind of campaigns during 2013/14 and try to hook their interest. Any effort really will need to involve a team of people and it's all rather beyond my scope of experience. So I'm gonna call in the experts if I can and we'll see where we go from there.

 

[Simon]

If you interview Lipkin, ask him how much he thinks he would need to operate a ME/CFS Center of Excellence each year at Columbia for 5 years. Centers of Excellence have been suggested by the US CFS Advisory Committee multiple times over the last decade but the response from the government has always been there is not enough money while other topics get funded. Centers are usually based at universities scattered across the country and would provide research, patient care, and education of health professionals/ public.

INIH recently devoted $100 million for Autism Centers of Excellence and $96 million total for 5 years for data analysis centers. $60 million over 5 years for autoimmunity centers. If those numbers sound big to you, recognize we're not talking about one person's salary or purchasing a house (which is the most expensive thing most people poesses): for comparison, look at the prices of ONE military plane in the link below - which can cost $30 million or up see the TIME link. My father retired from aerospace engineering and part of his work was in defense. While a strong US military is important, sometimes we go overboard with the spending.

Don't "undervalue" ME/CFS research -- we've been neglected for 3 decades - and findings in ME/CFS could end up being applicable to other medical conditions or reveal things about basic human biology we don't know about yet. Breakthroughs can happen from exploring the unknown.

I'd not heard about Center of Excellence for NIH projects (live in the UK) but I can see whey the CFSAC have recommended them so much. As Firestorrmm says, sorry - interview already done to too late to ask.

I'ms sure you are exactly right that cracking ME/CFS will lead to insights about basic human biology (there is reason it's proving so hard to crack) that will both add to our knowledge help in other illnesses too.

 

[Hope123]

@Hope123 You don't have to convince me I am afraid the interview was done last week and it's being written up now. Perhaps something we can raise next time? Thanks.

@biophile thanks. I have to do some bringing of people together with regard to the campaign itself and will recommend your link to all those who volunteer to be involved. Though this side of things is still in its' infancy. We really need help but I will be contacting those who have made big in-roads with these kind of campaigns during 2013/14 and try to hook their interest. Any effort really will need to involve a team of people and it's all rather beyond my scope of experience. So I'm gonna call in the experts if I can and we'll see where we go from there.

You can still raise the question. Just ask him in a follow-up e-mail -- "I have one more question." Not uncommon for regular media to followup after an interview to clarify something. Also, any opinion about virtual research networks instead of dedicated Centers of Excellence.

Whether he will answer it or not, being busy and all, is another question but the man did ask patients to advocate for research dollars. You can mention that what he says will be communicated directly to members of Congress .

 

[vli]

Please see the interview at http://phoenixrising.me/archives/21929 and help by joining the crowdsourcing group here. Thank you!

 

[Sasha]

New update - $17,275 from 198 donors - well done to everyone who donated!