Help with raising funds for Prof. Lipkin's study

[acer2000]

I think exploring a crowdfunding mechanism is a great idea. Kickstarter is the main one that comes to mind but there are other sites doing a similar thing now as well. They are all a bit different. I recently crowd funded another study through one called "Fundrazr" so I know its possible. There was also a segment on NPR yesterday talking about crowd funding scientific research: http://hereandnow.wbur.org/2013/09/17/scientists-funding-research

In my mind, crowdfunding seems like it could be a good option for this study because there is a lot of media coverage on it, its very easy to donate using a credit card, its amenable to promotion via social media, and its easy to get people focused because the various crowdfunding sites provide an easy window into how close the effort is to achieving the goal, updates/communications from the project, etc..

I think the first thing to do would be to reach out to Dr. Lipkin to see if he would accept/cooperate with such a mechanism. It would also be good to understand exactly how much money they are looking for. Also maybe they already have a mechanism to raise money set up that we could use. In any case, I'd guess that the fundraising program would have to be set up to deposit into their account for the study.

 

[Hope123]

Here's my suggestion.

1) Write Dr. Lipkin directly and ask him how much he thinks he needs and if people want to donate directly how to do it. You can google for his e-mail address. What I've learned over the years is less talk and more action. Better to make mistakes then sit around talking about possibilities.The best laid plans go nowhere if no one takes a step forward.

Just write him -- if he doesn't respond, then you try something else. But if he does, then you've got your answer. Don't be intimidated - just do it. One thing CFS taught me was I had very little to lose since I had already lost so much.

[Cue " A Little Less Conversation" by Elvis.

2) Take the clip where he asks for more money and send that to your Congressional Rep/ Senator. Man's smart -- knows where the money is. Tell your rep why it's important to you, their constituent, why they should fund ME/CFS.



3) I suggest asking him directly how best to give money because giving it through other channels, the middle man make take something off the top and decrease what he gets. The Hutchins Foundation from what I know is a private foundation and likely would not want to take money from outsiders and have the hassle of administering it. But you can always ask.

 

[Dolphin]

If anyone gets a reply from Dr. Ian Lipkin, the CF Allaince, the Hutchins Foundation, etc. but doesn't want to make it public, I'd still be interested in hearing by a private message.

 

[acer2000]

I'd be interested in knowing if anyone gets through to Lipkin as well. Would be great if they set up a donation link/page or indicated a preferred donation/fundraising method.

 

[acer2000]

Did this go anywhere? Are any of the ME groups doing fundraising for this study?

 

[aimossy]

I have been wondering the same thing.........but my instincts tell me someone will be working on it.
Ive got my visa card primed and ready!!

 

[Dolphin]

I'm interested in information too.

 

[vli]

Hi acer, I'm sorry I haven't been around. I've been struggling real badly and am in fact in hosp right now trying to get the Hong Kong gov. to pay for an ECG. I'll try to update when I'm back home.

 

[PDXhausted]

I came across this medical crowd-funding website the other day: consano.org

I'm not affiliated with them and don't know the pros and cons of that site versus others, but I thought it looked cool and could provide a potential conduit for us to raise money for specific studies.

 

[caledonia]

Here's how to donate to Lipkin -

If you would like to donate to Ian Lipkin’s research, click here. In the comments box, put “for M.E/C.F.S Study” to make sure it goes to the right place.

 

[aimossy]

Here's how to donate to Lipkin -

If you would like to donate to Ian Lipkin’s research, click here. In the comments box, put “for M.E/C.F.S Study” to make sure it goes to the right place.

did you set this up Caledonia!!!! ?
so donations will go to his ongoing work in the gut?
Im wondering if lipkins work will turn into a funding drive like invest in ME rituximab trial?
I would love to see that happen and will donate.

 

[vli]

@caledonia, thank you SO much for this. I did not know this. I will write to Lipkin to make sure if I donate this way, it will go directly to the microbiome study.

Edit: i have just given $300 one-off. I am not reporting this to show off or something, but to hope that this would spur others onto giving to probably the best researcher our illness currently has working on it. Please please give.

 

[caledonia]

did you set this up Caledonia!!!! ?
so donations will go to his ongoing work in the gut?
Im wondering if lipkins work will turn into a funding drive like invest in ME rituximab trial?
I would love to see that happen and will donate.

I didn't set it up, I'm just sort of the messenger. Somebody emailed into PR with the link, and as I'm now one of the content editors, I ended up fixing the article and posting the link. But I'm glad to hear such appreciate feedback - it warms my heart and makes me feel like I'm doing something useful.

 

[aimossy]

@caledonia .I cant do much but I can try and keep up with what you are all doing and sign petitions and donate to things.
I wonder how Lipkin would feel about a patient funding drive to his research he wants to do, apart from all the other advocacy to get govt funding etc.

 

[vli]

Just wanted to quickly update the thread on this:

I just emailed Lipkin asking:

"Some of us became aware of the possibility of giving to your laboratory at https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636. I have used this tool and stipulated that I would like my donation to go into your CFS pathogen study, but my gift receipt stated that my donation had gone to the Emerging Infectious Disease Bioterrorism and Autism Programs. I am concerned therefore that CFS patients would be discouraged from donating through this route because they have no assurance that their money goes to your work for the CFI.

In summary, I would be very grateful if you could tell us:
a) Is there a particular crowdfunding mechanism that you would accept?
b) How large a goal should we aim for?
c) If people donate through the above link at Columbia, how can they ensure that their money goes directly into your CFS pathogen study?"

I will post any replies that he gives us

 

[Andrew]

Good luck with this. I emailed him and never heard back.

 

[readyforlife]

I would love to donate but I would like to know for sure that its going to where we want it to go.

 

[vli]

I would love to donate but I would like to know for sure that its going to where we want it to go.

OK, I just got this reply fr him but I intend to follow through to make sure that any donations made to this link, https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636 like he said, would go SPECIFICALLY to the pathogen study.

"Dear Ms. Li,
You have my word that any donations to CFS research will be used only for CFS research. I am at a conference in Europe until Tuesday but have copied staff to ensure that this problem is rectified asap. Thank your for bringing this to my attention and for your support."

He copied the email to the following email addresses, so I intend to follow up with precisely those people next week about whether my $400 has gone to the pathogen study or not. I include them in case anyone wants to do the same thing (make sure donations go to our study)
Allison M. Kanas <amk2203@columbia.edu>,
Barkan Jill <jbb4@cumc.columbia.edu>,
Fern Schwartz <fs2475@cumc.columbia.edu>,
Gilbert Smith <gs559@columbia.edu>

 

[vli]

Good luck with this. I emailed him and never heard back.

Andrew I am sorry to hear that. Was your email long? i tried to keep mine short but I wonder whether he just can't be bothered to help us, in which case, frankly I don't see how we can "help him help us". I have been preoccupied with being sick as well as preparing for a second transcontinental move so I will not be able to badger his inbox again until next year.

 

[Andrew]

My email was much shorter than yours. The important thing, though, is you got this going.