Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

[JPV]

I'm not suggesting to copy this fundraising campaign, but I think it's a good example on how a little bit of creative thinking can help raise awareness for a cause....

Ice Bucket Challenge Inspires Unprecedented Giving to ALS

Washington, D.C. (August 17, 2014) — As of Sunday, August 17, 2014, The ALS Association has received $13.3 million in donations compared to $1.7 million during the same time period last year (July 29 to August 17). These donations have come from existing donors and 259,505 new donors to The Association.

In a message posted yesterday, Barbara Newhouse, President and CEO of The ALS Association, explains what this incredible outpouring of awareness and generosity means in the fight against the disease.

 

[Sasha]

Wow, hadn't heard of that - they even got Bill Gates in:

Very clever idea - it's funny, it's a small personal challenge so whoever does it has an interesting experience and part of it consists of recruitment by publicly challenging donors. Genius!

 

[aimossy]

I have been watching this on the net, It went viral!! It is a brilliant idea. I can't remember full details someone correct me if I am wrong but it started with a sports person reasonably well known who developed the illness and he sent off the challenge to do this and donate. Pretty inspired idea. Pity we don't have a fully accepted illness yet and someone famous championing. But hey that is no reason for us not to have something inspired like this in some way happening for our crowdfunding . You can adapt the idea...something funny that people like watching and makes them want to do it for fun.

Mud pies in the face anyone? Maybe too much for some, considering I know sick humour sorry!!

Anyone got their thinking caps on?

 

[Sasha]

Mud pies in the face anyone? Maybe too much for some, considering I know sick humour sorry!!

Anyone got their thinking caps on?

Custard pie in the face - I'd take one in the face for us!

 

[aimossy]

I won't say my next thought think I need to go change my own subject! Face plant

 

[Aileen]

This is all over the national news here in Canada. First when they initially presented it, and several times after, when a well-known Canadian did it. Our most infamous mayor has gotten in on it. That was on the news last night.

 

[Aileen]

As for a similar campaign ... Dr. Lipkin's microbiome study is one we want to fund. Anyone thing of something funny to do with peoples butts?!

 

[Bob]

Today's Crowdfunding Update.

The latest crowdfunding total is:

$112,776 from 516 donations

Thanku to everyone!

 

[geraldt52]

Does anyone know if the 516 number Columbia is reporting is "donations", or "donors"? ie, if one individual donates 3 separate times is that counted just once, or three times, in the 516 number? With quite a number of people having given multiple "donations", I hate to think that there might be even fewer "donors".

 

[catly]

Wow, hadn't heard of that - they even got Bill Gates in:

Very clever idea - it's funny, it's a small personal challenge so whoever does it has an interesting experience and part of it consists of recruitment by publicly challenging donors. Genius!

It's all over, celebrities, musicians, local businesses, most of my non-famous facebook friends. I guess ALS patients have a foundation they all trust in the US where the $$ are going to help with research and advocacy.

Doesn't seem like we have one place for that for MECFS in the US. Just a handful of dedicated experts, like Ian Lipkin and a few other groups and individuals who are trying to help us.

Anyway, Kudos to those who came up with the idea (although the news today reported that one of the originial creators of this idea, a friend of someone with ALS, was killed in a diving accident over the weekend ), ALS is a horrible disease with a 2-5 year life expectancy with rapidly progessive loss of function and ugly death.

 

[Bob]

Today's Crowdfunding Update.

The latest crowdfunding total is:

$114,126 from 522 donations

Thanku to everyone!

 

[Bob]

Would anyone be interested in being part of a small team of people from phoenix rising to identify and write to philanthropists and charitable foundations?
Or doing the same seeking celebrity endorsements for this crowdfunding project?
If you have some experience of this sort of thing, it would be very helpful.
We can connect people together to work on these things independently.

If it's something you think you might be interested in helping with then please contact @aimossy on the forums in a private message to express your interest.

Thanks from the team!

 

[Bob]

The crowdfunding total is steadily creeping up folks. Thank you!

 

[Bob]

Does anyone know if the 516 number Columbia is reporting is "donations", or "donors"? ie, if one individual donates 3 separate times is that counted just once, or three times, in the 516 number? With quite a number of people having given multiple "donations", I hate to think that there might be even fewer "donors".

Thanks for mentioning this, Gerald. It's actually been rather a good thing that you asked the question, as you'll see below.

To cut a long story short, we thought we had clarified this issue, a long time ago, but it now seems that we'd had a slight communications glitch with Columbia University. (We can't blame brain fog on this occasion!)

Your message prompted us to triple-check whether we were quoting the number of donations or donors, and it seems that we've always been quoting the number of donors, and not the number of donations (which we thought we'd been doing.)

So from this point forward, we'll (definitely) be reporting the number of donations.
The good news is that there is a jump in the number of donations today (see the next post), because of this adjustment.

We apologise for any inconvenience caused to anyone.

 

[Bob]

Oops! We just found out we've been giving the number of DONORS to the appeal, not the number of donations (some people have given more than once). Apologies from us and our friends at Columbia. The total raised has been accurate throughout.

From this point forward, we'll (definitely) be reporting the number of donations.

As of today we have 658 donations - woo hoo! (from 525 donors) and either way it's $114,141. Thanks to all those who gave, and especially to those who've given again.

Today's Crowdfunding Update.

The latest crowdfunding total is:

$114,141 from 658 donations. (Previously we've been giving the figure for 'donors'.)

Thanku to everyone!

 

[Bob]

Llewellyn King mentions Dr Lipkin's study in his latest opinion piece:

Crisis in medical research portends a disease tsunami
http://www.thenewstribune.com/2014/08/21/3340943_crisis-in-medical-research-portends.html?sp=/99/447/&rh=1

An extract:

You may have heard of the celebrated virus hunter, Dr. W. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, because he has been called on for expertise in Ebola. What you might not know is that Lipkin is so starved for funding that he has had to use crowd-funding to support his research on Myalgic Encephalomyelitis, the ghastly disease commonly known as Chronic Fatigue Syndrome (CFS).

 

[Sean]

From this point forward, we'll (definitely) be reporting the number of donations.

Can we get both donations and donors?

 

[Bob]

Can we get both donations and donors?

Possibly, but we didn't think there would be a great call for both, and it could get confusing. Do you think it would be helpful/important? Perhaps it's something we could report on an occasional basis?

 

[geraldt52]

Possibly, but we didn't think there would be a great call for both, and it could get confusing. Do you think it would be helpful/important? Perhaps it's something we could report on an occasional basis?

Thanks for clarifying that, Bob. Now that we're sure which it is, I wouldn't want anyone to have to put any extra work into reporting both, but it is interesting. Occasionally reporting both would certainly be fine too.

I think the "donations" number is indicative of the "breadth" of the contributions, while the "donations" number is indicative of the "depth" of the contributions...if that makes any sense. I was glad to see that the numbers were relatively close to each other. I would have hated to see a much smaller number of donors being responsible for the number of donations, which would indicate that we weren't getting very wide participation and instead had a relatively few people giving repeatedly. In my mind, the more donors the better, regardless the total dollar amount...everybody just giving what they can.

 

[Sean]

The ratio between donors and donations is useful info in helping figure out how to increase both. In the immediate practical sense, of course, the important figure is the total amount of donations. But in the longer term the total number of donors is just as important to crowd funded projects, the bigger the pool of possible donors the more reliable and substantial our funding base is likely to be.

Maybe update the total amount donated at least once a week, and the total number of donors every month or two.