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Fundraising for Dr Lipkin's study.

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Remember we're all friends here, and we all want the same thing, and we're all disappointed that the crowdfund campaign hasn't gone as viral as we'd hoped. Personally I think there are a number of factors for this, some of them complex and some more simple, and I think they've probably all been mentioned in this thread. No one is to blame; It's all down to circumstances. It's an interesting thread, and the team is listening, and is aware of all the issues raised. We're putting together a response to the issues raised, hopefully to post soon, but we're working on a new mini-project (see here for new announcement) so it might be delayed for a few days.
 
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adreno

PR activist
Messages
4,841
mobileparticipants.png


Participants who chose to use one mobile tool (mobile web or mobile app) raised 2.2 times more money than non-mobile participants. Individuals who used both mobile web and a mobile app were even more successful, raising 2.95 times more than non-mobile participants.

The impact of mobile on peer-to-peer fundraising

5 Mobile Apps Nonprofits Can Use to Boost Donations
 
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Tuha

Senior Member
Messages
638
There were certainly mentioned some reasons why this campaign didnt reach more money. Personally I think all of them are a minor reason. The campaign was good explained (of course not everyone will understand but I mean in generally), there are big names behind the study, there was a huge amount of publicity, almost every ME patient has gut problem, there is a potential to get a treatment if they will find something interesting,....so I think not for everyone but in generally it´s a catchy study.

I wouldn´t compare it with Rhituximab campaign and Canary in the coal mine campaign - because treatment option and getting publicity are maybe more important in this time for ME community.
I looked on other ME research campaigns and I think we can say that till now we were able to get around 100 000 EUR a year for a campaign - it´s not too much. Regarding all these things I would say that Lipkin´s campaign is one of the most successful in ME history.
But I think we cannot be glad with this. The main problem I see that thre is still small patients engagement. We got 4000 likes on facebook, other patients were reached by forums, web sites,... Well how someone said a lot of patients just give "like" maybe even without reading but if only half of them would read the page......there are almost daily updates and so on. Till now we got 900 single donations - I know the patients who donates regulary almost every month. So to be little bit optimistic how many patients joined the campaign - 500 - 600? So I think we have a lot of job in the comunity - the patients have simply to understand that in our case (almost no federal funding and big donors funding) we have to fund ME research by ourself. I think we are not far away from the time when we get more federal funding - but now it´s up to patients and I am not sure if they understand it.
So I would say not many patients joined the campaign. How many patients did even do a small effort by asking friends and family to donate - it´s still not too late - we will have christmas time. Also how many organisations got behind this study? Almost all ME organisations and many support groups in all over the world were asked to promote this study to their members - there were only few of them which really did it. And we got maybe only 5 responses. It´s really frustraiting if you send some hundreds emails and you get 5 answers - even more negative answers would make the campaigners happy.

So I think our community has to do better. Imagine if we would be a group of 10 000 motivated patients to fund ME research. The average donation for Lipkin´s study is around 150 USD. So we would be able to get easily 1 500 000 USD.
Here I see our reservs and potential.
 
Messages
4
I don't mean to minimize the generous contributions of so many people in the 9 months of fund-raising ... and I am truly grateful to every person who has donated.

But let's look at the facts.
  • This study is going to be performed by one of the most respected and brilliant researchers in the field, a man who is internationally recognized as an authority on the use of molecular methods for pathogen discovery, and who works at the world’s largest and most advanced center for microbe discovery and diagnosis.
  • The results of this study may identify the cause of Chronic Fatigue Syndrome in many patients who are battling this terrible disorder.
  • In 9 months (about 275 days), $148,361 has been raised.
  • If this pace of fund-raising continues, about $200,000 will have been raised at the 1-year mark.
  • The goal of the fund-raising is $1,270,000.
  • If this pace of fund-raising continues, it will take over 6 years to reach goal.
  • The actual study will take just 1 year.
  • Patients and supporters in Norway – with a population sixty times smaller than that of the US – raised $430,000 in 90 days for a clinical trial of Rituximab.
  • Then, a slew of US campaigns began crowdfunding and reached or exceeded their targets at astonishing speeds: $213,000 in 31 days for the documentary film Canary in a Coal Mine; $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.
I can't help but feel like there is something we're not doing that these other campaigns did. Do we really have to wait 6 years just for Dr Lipkin to get started?? If we put our heads together, maybe we can find a way to get this thing moving. Please, pass this appeal along to others, give (more) if you can, and if you have any ideas or suggestions for how we can do what others (like the Norwegians) did, share them here. Thank you!!

Drew
:angel: Help raise $1.27m for Dr Lipkin's ME/CFS gut microbiome study! :angel:
It's WORLD CLASS!
Give what you can, spread the word
Donate here, visit the site, follow on Facebook or Twitter
Copy my signature!
In my very humble opinion, what you are not doing is giving the fundraising a laser focus. I noticed other blogs where people said there should be a name, and I agree because it focuses the drive and need. Many studies have shown that complete strangers will help each other depending upon how they are asked. May I suggest that the name for this fundraising be: PleaseHelpME
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
But it's not justy that we need to convince, it's the masses out there that we want to donate. And people are not going to read through a nine-part blog before they decide to donate. The goals of the study should be clear and concise, for everyone to understand. I believe this is also @justy's point.
Yes, was my point exactly - wanted to see and prove why people are not getting on board with this project.

I myself am now thoroughly convinced, but it has taken me a lot of time and energy to understand it and im not sure I could easily explain it to a non sufferer.
 
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Tuha

Senior Member
Messages
638
i just checked the description of the study on facebook microbiome page:

"The study: a cutting-edge hunt for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system – led by “the world’s most celebrated virus hunter”, Dr W. Ian Lipkin at the world’s largest and most advanced center for microbe discovery and diagnosis at Columbia University in New York.

The payoff: A world-class study with the potential to swiftly lead to treatments using drugs, probiotics or exclusion diets.."

I think this quite explain the aim of the study and say everything in the shortest way possible. The people who are more interested they could read many articles about on facebook page and web site. I dont know how better we can describe the study. If someone doesnt understand he can also ask. I think patients should also try to do little bit more effort and not be demotivated immediately if they dont see immediately everything - they have to take little bit more time. It´s always like this if you dont know a web site or facebook page
 

Tuha

Senior Member
Messages
638
I will repeat but I think the patients still dont understand fully that when there is no federal funding it´s up to them to raise funds. Remember that 1 study can change everything - we could see the impact of Stanford brain study in the world- it was catched by many newspapers and journalists - Lipkin has the same potential.
I think ME patients like the others simply dont like to leave their money - it´s a normal human character. This campaign had to reach at least 10 000 patients and we got only 500 patients involved and very small ME organisations support. Regarding the knowledges which we have now about ME - I think there are not much more ME research studies who are better designed, with bigger name and potential.
We need better patients financial participation (I took all the aspects which were already 1000 times discussed like patients social situation and so on).
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Fine. First we get blamed for being sick, then we get blamed for not being able to raise the money to support our own research. The truth is that many of these suggestions were made long ago, in the main fundraising thread.

I don't see much we can do, when we don't have any control over the project website or the donation process. Sure we could set up our own website, but it's the official one that counts. There are lots of great suggestions in the article I quoted earlier, none of which we can implement.

Well, that makes over 2000 assholes, because they haven't donated, right? Or maybe it's because 60% were on mobiles. That leaves 1200 being able to donate, of which 3/4 might have done so. Not bad, IMO.

It's time to forget the idealist nonsense and accept how human nature works. Those of us who are sick are prepared to go through hell to donate. For regular people, if it can't be done in 2 minutes on a mobile device, forget it. They're already onto something else.

Given that it's a patient led crowdfunding attempt, yeah, I'd say it's got to be at least in part down to the patients, no? It's not about whether it's fair or not. We all know it isn't fair. But like you say, lets not be idealist about it. Reality is that until a breakthrough is made to legitimize the disease, we are pretty much on our own.

If people really wanted to have helped they could have easily got in contact with those running the campaign ages ago and got involved directly. The Contact page on the website clearly makes this a very easy option. Or even indirectly people could have helped in a variety of ways, some of which are suggested on the site itself under How to Help, or in other ways with a bit of thought.

Ultimately it does boil down to how much the patient community wants it, and although getting across the message about how this research might translate into on the ground changes for patients could have been better, there has been a fair amount of exposure with articles and so on on sites with very big reach, which have had many thousands of views (I'd guess 10-50k), and even if you don't understand entirely, it's clear from a half-hearted attempt to understand, that we're talking about one of the top top researchers in the world who had an outstanding reputation and who says he believes the disease is biological and he can find what's causing it. Isn't that enough to show some support? Even a single dollar because you don't fully understand it? Clearly the answer is no. But I find that disapointing because it ought to be enough for more than 800 patients to give a dollar.

Now let's address this mobile users business. I think this is a bit of nonesense. I just tried on my mobile and it works fine. No problem at all. I agree it needs to be easier for average public person who has only one spare minute, but where are the patients who are willing to go through hell to donate? Even if it didn't work on mobiles (maybe it doesn't on other makes to mine) then most people have access to a laptop, desktop or could even post a cheque, so they could donate if it really mattered to them. It's clearly not hell - it's half a dozen fields like address, and card number etc, pretty standard really. Then we look at how many donations there have been, 800 and something? Are these even unique people? My guess is no, so what 600? 500? patients showed their support?

Yeah, I still think patients need to take some responsibility for this. Just to reiterate, it shouldn't have to be patients - it's outrageous that we are in the position that we are in, but that is the reality of it - either we want it enough that we make it happen, or it doesn't. The questions people who are aware of the campaign needs to ask themselves is, i) have I looked at this properly cause I don't want to miss an important opportunity. ii) have I donated, even a dollar, if I have a dollar I can spare? iii) have I spread the word to those I can? iv) what else can I do to make this research happen - particularly increasing non-patient awarenes and getting them to donate?

Assuming someone else is going to make it happen, or being paralysed by the unfairness of it all, will result in a missed opportunity here.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Now let's address this mobile users business. I think this is a bit of nonesense. I just tried on my mobile and it works fine. No problem at all. I agree it needs to be easier for average public person who has only one spare minute, but where are the patients who are willing to go through hell to donate?
You make interesting points, but I think the reference to mobiles was probably a reference to text-giving, whereby you just have to send a text message to make a donation.
 
Messages
2
Location
North of England
As I have said before, it seems Columbia is quite conservative in the way they accept donations, having to fill out forms on their website. Accepting donations through Paypal would mean every website or blog writing about the project could have a donate button. People's donations are often impulsive, direct emotional reactions to something they see or hear. Campaigns that allow SMS donations also seem to do well.

Foreign Currency charges for Lipkin Appeal

I agree with Adreno about the overly complex donation process. I've been following this thread having also been confused by the lack of interest in the appeal, however I too was one of (possibly) many people waiting to see how the appeal panned out before making a contribution. I live on benefits and thought the best way I could do anything was to donate $10 a month. My bank charged me £1.25 (nearly $2) "Non-Sterling Purchase Fee". Has anyone else had this donating outside of the US? Does Columbia realise this? That's 20% of my contribution a month on fees and prevents me from making small frequent donations.
 

Anne

Senior Member
Messages
295
Forgive me for not having read the entire thread - just wanted to put my 2 cents in:

It HAS TO get easier to donate. All those forms to fill in - if I sent an appeal to my family and friends or the Swedish ME community I think most of them would just not make it through to the actual donation.

I think a PayPal option is absolutely necessary. Could this not be set up by someone, directing money towards an account from which the money is then transferred to Lipkin/Columbia?

The Norwegian You and ME project collected large funds in a short period of time as you know, and I think a part of that success was that it was so simple to donate through PayPal.

(Of course, a treatment project is easier to sell, but I think we could market this too, but it has to be super-easy to make a donation.)
 

snowathlete

Senior Member
Messages
5,374
Location
UK
You make interesting points, but I think the reference to mobiles was probably a reference to text-giving, whereby you just have to send a text message to make a donation.

Thanks for pointing that out, I had misunderstood. That makes sense, and I agree it would be a good idea.

I still think the project starts with the patients though and if they don't bother to support it sufficiently, how can we expect the general public to take an interest, even if there was a way to text donate?
 

Sean

Senior Member
Messages
7,378
It's time to forget the idealist nonsense and accept how human nature works. Those of us who are sick are prepared to go through hell to donate. For regular people, if it can't be done in 2 minutes on a mobile device, forget it. They're already onto something else.
+1

Though I would suggest even 2 minutes is pushing it. We should aim for a max of 3-4 mouse clicks/screen taps and entering an amount. Any more is starting to become a significant disincentive.

Among other things, motivation is related to the size of the donation. The smaller it is the less motivation to persist with an inefficient donation process. It is a simple cost-benefit reckoning of the kind people make dozens of times a day, almost without thinking, to practically manage their lives.

I still think the project starts with the patients though and if they don't bother to support it sufficiently, how can we expect the general public to take an interest, even if there was a way to text donate?

Agree with this. If we can't get the patient community firmly on board, nobody else will be interested and we can't blame them for that.
 

Tuha

Senior Member
Messages
638
guys it was mentioned already several times that Paypal is not possible because Columbia university doesnt allow it - I think because of security issue and it doesnt seem that they will change it. We can think that it´s a stupid reason but We have to take it like the reality.

I am foreigner - my english is not good but it took me 1 minute to pay with my credit card - it´s really easy. I dont have big cognitive issue so I cannot judge but I think if you cannot pay this transaction you will not be able to pay anything else with your credit card. If someone has such a big problem - he can ask his family or a friend to do it.

I really dont think that the question of Paypal can stop people from donating. Please dont try to find how it´s not possible but how it´s possible. People will discuss hours why there is no paypal option but if they need to spend 1 minute to pay with credit card - they are complaining
 

geraldt52

Senior Member
Messages
602
This probably isn't a great thread to discuss this in any detail, but it's an interesting twist on "incentivizing" donations for a project on the human microbiome, so I thought it was worth putting it in the record as an idea. I've always thought that some incentive to donate might help, but never had any ideas worth pursuing...
http://humanfoodproject.com/americangut/
 

Forbin

Senior Member
Messages
966
i just checked the description of the study on facebook microbiome page:
"The study: a cutting-edge hunt for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system – led by “the world’s most celebrated virus hunter”, Dr W. Ian Lipkin at the world’s largest and most advanced center for microbe discovery and diagnosis at Columbia University in New York.

I think this is a point that should get promoted as well. Not only is Dr. Lipkin regarded as being at the top of his field, but he and his lab have access to cutting-edge technologies at the world’s largest and most advanced center for microbe discovery and diagnosis. This is not the minor leagues; this is the top of the game - and an amazing opportunity for an illness that has suffered such neglect over the years.
 

Sean

Senior Member
Messages
7,378
guys it was mentioned already several times that Paypal is not possible because Columbia university doesnt allow it

I understand that, and am not suggesting we harass Columbia to use Paypal. Just using it as an example of a quick easy online payment method.
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
For some reason, Dr. Lipkin's project Microbiome hasn't hit me as something worthy of investing in. I've had minimal faith in many researchers given what has transpired in the last 5+ years. I hate politics and I am not a fan of researchers with vested interests publishing data that could be challenged.

Medical publications have become no better than network and cable news at reporting facts. Everyone has an agenda and money/financial funding/grants/advertisers/lobbyists/government agencies seem to cater to special interests above the needs of patients.

So many research opportunities so I wondered why the microbiome project was more important than other research efforts. With limited funds, patients have to consider the best investment.

Here is a link to existing Human Microbiome Projects: http://www.hmpdacc.org/catalog/

What struck me was the various sources (copied below*) needed to determine a microbiome. This is a huge task for a normal populations - never mind a specific disease

The number from the GI tract is significant to me now since I became aware of findings from the Pridgen/Duffy investigation of GI biopsies in patients with FM finding HSV rather than EBV or HHV-6. The GI tract has been identified as a huge part of the immune system in recent years. Carol Duffy looked for other viruses but HSV was found.

Another consideration is the lack of investigation into retroviral agents. While XMRV was deemed a laboratory created virus, the likelihood that another replication competent retroirus has been created is considerable given the vast investment in vaccine, genetic,and other biotech research for so many years. It has become well known that replication competent retroviruses can ruin many research cell lines. .. Too tired to continue... will return when I'm able.

*Reference Genome Projects
Category All projects
Airways 145
Blood 70
Eye 1
Gastrointestinal tract 717
Gut 29
Heart 2
Liver 1
Lymph Node 1
Nose 2
Oral 435
Oral Cavity 11
Oral cavity- mouth 1
Skin 290
Stool 1
Urinary tract 6
Urogenital tract 348
vagina 18
Wound 4
Other 768
All Strains 2850
 

bel canto

Senior Member
Messages
246
i just checked the description of the study on facebook microbiome page:

"The study: a cutting-edge hunt for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system – led by “the world’s most celebrated virus hunter”, Dr W. Ian Lipkin at the world’s largest and most advanced center for microbe discovery and diagnosis at Columbia University in New York.

The payoff: A world-class study with the potential to swiftly lead to treatments using drugs, probiotics or exclusion diets.."

I think this quite explain the aim of the study and say everything in the shortest way possible. The people who are more interested they could read many articles about on facebook page and web site. I dont know how better we can describe the study. If someone doesnt understand he can also ask. I think patients should also try to do little bit more effort and not be demotivated immediately if they dont see immediately everything - they have to take little bit more time. It´s always like this if you dont know a web site or facebook page

I agree that the above statements are descriptive of the project, but it reads very "dry". A good name - catching attention and easy to remember - would help, but there must be ways that this project could be described and contributions requested that would grab attention and spark more interest than the above (graphics, maybe?) Marketing the project, in other words.

I don't have those skills to contribute, but surely someone somewhere does.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I do urge people to explore the website, Facebook page and Twitter account before commenting on the promotional material and marketing strategy.
We are absolutely receptive to, and welcome, all fair and constructive criticism, but it's a little demoralising for the team to be told that there's no marketing strategy, and no graphics, when we've been continuously doing graphics and marketing for eight months. (That's not to say we couldn't do more - There's always room for more - And we could have been even more creative if we'd have had more person-power.)

We've also had lots of catchy lines about the research put out (e.g. on Twitter) over the months, that have received lots of attention.

Remember that Phoenix Rising isn't our primary crowdfund portal. We post all the essential info on PR, but we don't bombard it with all of our shorter promotional Facebook posts, Facebook discussion threads, 140 character Tweets, promotional images and other marketing material.

We're very happy to see this creative discussion taking place - If anyone can find a way to promote the project further, within our community, and beyond, then that would be wonderful!

Actually, we're lacking a robust response from regional/local ME/CFS support groups in the USA - If anyone has contact with any of those, then please bring their attention to this project, and include links to our website, Facebook page and Twitter account. Or if a group of you would like to get together to do this, then perhaps you could use this thread to make yourselves known to each other?

And we are listening if anyone has a killer marketing catch-phrase.

In case helpful, these are an example of Dr Lipkin's own words:
So what we want to do – we’re desperately eager to do – is to characterise the microbiome in the gastrointestinal tract to see whether or not in fact we can identify populations of bacteria, viruses or fungi – it could be fungi too – that are responsible for this dysregulation of immunity which then presents as interference with cognitive function, persistent fatigue, and so forth.
 
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