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

[Bob]

Today's Crowdfunding Update.

The latest crowdfunding total is:

$97,765 from 491 donations.

Thanku to everyone!

 

[SB_1108]

I just wanted to say thank you to the volunteers of the Microbe Discovery Project for continuing to post updates to the forum and for all the work you have done towards fundraising awareness.

I'm getting pretty concerned about the lack of participation and donation from the CFS community. I am sure there are a million reasons for this lack of participation (mainly a lack of funds) however, I'm just curious about what point we can reevaluate the fundraising efforts?

I know we have discussed the idea of using standard crowd-funding websites (i.e. Kickstarter) in the past but because of the drawbacks (fees/etc) we were hoping to avoid that approach. However, I am beginning to think that it is time for us to reevaluate our stance. Based on how many people are already signed up, website traffic and the ease of donating - people may be more likely to contribute to Kickstarter. Or if nothing else, maybe we just need to try something new?

We could start with a small goal (like Jennifer Brea) to gauge how quickly we make can progress… then continue to increase the goal if we exceed the initial request.

I guess I just want Dr. Lipkin's study funded as quickly as possible in the hopes that some abnormality can be found and a cure can be developed. Even one more day with this condition is one day too many!

 

[Bob]

Today's Crowdfunding Update.

The latest crowdfunding total is:

$97,815 from 492 donations.

Thanku to everyone!

 

[geraldt52]

I just wanted to say thank you to the volunteers of the Microbe Discovery Project for continuing to post updates to the forum and for all the work you have done towards fundraising awareness.
I'm getting pretty concerned about the lack of participation and donation from the CFS community.

FWIW, SB_1108, I agree with you but I'm at a loss for what we can do about it. Obviously, donations coming in at one a day are not going to make the goal by the end of the year, unless several of those donations are six figures. Lacking those large donations, we can only rely on broad participation in order to raise the kind of money we're talking about. The question is why we aren't getting broader participation. I really wish those who have decided not to contribute, and certainly they have every right to decide not to, would tell us why they made that decision so maybe we, or Columbia, could address it.

It's a tall order asking sick people to contribute and fundraise for their own research, and I believe the PR team is doing the best it can. Volunteers are hard to come by, none are professional fundraisers, and they can't work themselves into being sick(er).

The recently crowd funded documentaries seem to have done much better than we are at raising money. Why is that? Is the word not getting out beyond our relatively small group, or are people aware and just deciding that this isn't a worthy (enough) cause?

It's just all so discouraging when someone of Ian Lipkin's stature shows up and wants to help us, and the money just isn't there.

 

[Esther12]

I wonder if maybe there is difficulty in understanding this sort of research and what it's likely to achieve, compared to fund-raising for a film?

For a long time when I was ill I have very little interest in research, and would tend not to donate to individual projects like this because I felt unable to distinguish good research from bad. We want to be able to reach the mass of patients who are happy to donate $20 to something they think is worthwhile, and to have them spread it around to other patients they know.

tbh... it seems to me like the current effort has done most of what I'd suggest, and done it well.

Maybe it would be good to get some tips from some of those previously successful crowd-funding campaigns? (also - how much did they raise? Were they really much more successful, or if this just a much higher target?).

 

[biophile]

A PayPal button might help make things easier.

 

[Bob]

We have had donations from more than 22 countries and 33 US states so far! This is amazing! Thousands and thousands of people across the globe have this illness.

Send your donation messages, or your reasons for making a donation, to microbediscovery@gmail.com We would love to hear your messages and other donors would like to read them. If you wish to remain anonymous, please write 'anon' at the end of your message. We will publish these messages - they would mean a lot to everyone making efforts to get this research funded and done!

Imagine if we got 10,000 donations from across the globe. We have already received almost 500! Keep going everyone and thank you so much!

 

[daisybell]

I held off from donating until recently because I doubted that this research would progress treatment for us...
If the vast majority of us have an auto-immune condition, which is triggered by a pathogen of some kind acting on a predisposed system, then the discovery of the pathogen did not seem relevant to me.... (I accept that I may have missed the point here). Funding initiatives such as Canary in a Coal Mine, with the potential to inform the public, and Rituximab research seemed to me to be better uses of my funds.

However, I have continued to follow the discussions, and was swayed in the end by the realisation that having researchers of this calibre is vital to us, and we need to support them. Every piece of the puzzle counts, and every respected researcher needs to be given our support.

I don't know if others feel the same, but perhaps this argument is worth making?

 

[aimossy]

The microbiome is one of the most promising areas of research with respect to research into autoimmune illnesses - it is very relevant to our immune system findings and its work that needs to be done. Who knows what they could find with their level of skill. I feel that we have had a super stroke of luck having Lipkin and Hornig on the case with our illness and we are mad not to fight for every dime to help make it happen. They are looking into all sorts of components, metabolome, proteome, cytokines, DNA, RNA (there is more) and microbiome trying to collect information and figure out what's happening in our body systems.
I really feel this is not microbiome just for the sake of microbiome - they have reason to get this work done. If I wanted any team to get involved and investigate this illness its this one, they are exceptionally good at figuring things out and problem solving and their work is respected globally.
I also support Rituximab studies strongly and a few others but my brain fails me tonight, so long as its quality work. I really appreciate daisybell's honesty about donating.

I think you can follow the Microbe discovery face book page without being a member on FB.

 

[SB_1108]

Well I vote that we move forward with a Kickstarter campaign!

I think Kickstarter will give us more traffic from outside of the CFS community (which we desperately need because many of us with CFS typically don't have jobs or incomes beyond disability allowances).

I know personally, I just felt like the Columbia website was a hassle - it was inconvenient for me to input all my information and I wasn't familiar with the website… all the drop down menus almost made me back out! I had to pretty much force myself to do it. I know that sounds ridiculous because it really wasn't that difficult, I think people just like simplicity. If people are already on Kickstarter, its just a matter of clicking a couple of buttons to donate.

I like the idea of having a pay pal button on the website but I still feel like we would get more outside traffic on Kickstarter. And I'm not sure how the donation account works? How do we ensure the funds are being distributed to the proper account?

The rate we are going right now is too slow and I'm afraid we will not meet the goal! The fact that we have this opportunity with Dr. Lipkin and his team is beyond amazing for all of us and I don't want it to pass us by without a fight. I'd be happy to assist with this effort as much as my health will physically allow me to volunteer.

 

[DanME]

Here are my ideas:

1) Research is abstract and science is complex. A lot of patients cannot differentiate between good and bad projects. They simply lack medical and scientific knowledge.
(Lipkin is probably one of the best medical scientist in the world and he knows, what he is doing. We should throw money at him.) Solution: Maybe we should have a site, where we recommend projects and explain, why it's worth funding them!

2) It is a lot easier to crowd fund documentaries, because they trigger emotions, empathy and a sense of community. Marketing experts know, how important it is to trigger emotions. Documentaries (especially professional ones) are very important for our cause. We need attention! And they create a community. But only good research by good universities will bring us a cure or at least a relief. Solution: Better marketing skills, better texts, triggering emotions and a sense of community.

3) We need to internationalize funding. Even if we translate the crowd funding pages into several languages, I can guarantee you, a lot of people have never heard about Lipkins study in Germany, because the national and local groups don't advertise it.
Solution: We must combine our efforts! National groups must work together and advertise for international projects.

(when the MeAndYou campaign made their funding statistics publicly available, I realised, that the most donations came from Norway. Germany contributed only 17(!) donations (probably 10 were from me, my family and my friends). The national CFS foundation has over 2500 members and they are a lot more silent patients.

We have a lot of potential. We all suffer. We all feel neglected by the medical community. We all hope for cure. And we are many. We are 17 million patients in the world. Even when just 0,1% of them spend 20$, we would generate instantly 3,4 Million$. And a lot are able to spend more.

1) We need to educate and explain the projects, which need funding.
2) We need to trigger emotions, a sense of urgency and use good marketing.
3) We need to internationalize our campaigns.
4) We must be professional.
5) We must convince everybody that research is the most important factor!

I want to really thank everybody, who is involved in the Lipkin crowd funding campaign. You did a marvellous job. Now it is for us to help them with all our efforts.

First I ll talk to friend of mine, who works for a big marketing company. Maybe she has some ideas.

 

[Blue]

There were some more donations from Germany for MEandYOU ;-) The Lost Voices Foundation raised more than 5000 Euros http://www.lost-voices-stiftung.org/spenden-helfen/aktionen/crowdfunding-fuer-me-cfs/ and many people were involved promoting the campaign here or at least tried ;-) Of course it could have been more, we are unfortunately a very small group of active patients here. I have translated the press release into German for example and I would be happy to do this for the Microbiome campaign as well, if wished. There was a great article in The SPIEGEL, a major german news magazine, about the MEandYou campaign and I think in other countries there was good coverage as well.

 

[DanME]

There were some more donations from Germany for MEandYOU ;-) The Lost Voices Foundation raised more than 5000 Euros http://www.lost-voices-stiftung.org/spenden-helfen/aktionen/crowdfunding-fuer-me-cfs/ and many people were involved promoting the campaign here or at least tried ;-) Of course it could have been more, we are unfortunately a very small group of active patients here. I have translated the press release into German for example and I would be happy to do this for the Microbiome campaign as well, if wished. There was a great article in The SPIEGEL, a major german news magazine, about the MEandYou campaign and I think in other countries there was good coverage as well.

I like to apologise. I wasn't aware of the Lost Voices Campaign. I just remembered, that I was really disappointed by Germany's contributions. But maybe I just remembered a wrong number??? I was really happy about the article in The Spiegel.

 

[Blue]

Nothing to apologize for, Daniel

 

[DanME]

Well I vote that we move forward with a Kickstarter campaign!

I think Kickstarter will give us more traffic from outside of the CFS community (which we desperately need because many of us with CFS typically don't have jobs or incomes beyond disability allowances).

I know personally, I just felt like the Columbia website was a hassle - it was inconvenient for me to input all my information and I wasn't familiar with the website… all the drop down menus almost made me back out! I had to pretty much force myself to do it. I know that sounds ridiculous because it really wasn't that difficult, I think people just like simplicity. If people are already on Kickstarter, its just a matter of clicking a couple of buttons to donate.

I like the idea of having a pay pal button on the website but I still feel like we would get more outside traffic on Kickstarter. And I'm not sure how the donation account works? How do we ensure the funds are being distributed to the proper account?

The rate we are going right now is too slow and I'm afraid we will not meet the goal! The fact that we have this opportunity with Dr. Lipkin and his team is beyond amazing for all of us and I don't want it to pass us by without a fight. I'd be happy to assist with this effort as much as my health will physically allow me to volunteer.

I vote for kickstarter as well. The problem: Do they accept campaigns for medical funding?? Of course we would give them 10%. But the site is efficient, convenient, simple, trustable and very well known.

 

[SB_1108]

2) It is a lot easier to crowd fund documentaries, because they trigger emotions, empathy and a sense of community. Marketing experts know, how important it is to trigger emotions. Documentaries (especially professional ones) are very important for our cause. We need attention! And they create a community. But only good research by good universities will bring us a cure or at least a relief. Solution: Better marketing skills, better texts, triggering emotions and a sense of community.

I love this idea! I think we should get in touch with Ryan Prior/Nicole Castillo with the Forgotten Plague/Blue Ribbon Project and see if they would be willing to develop a very short video for us (maybe they have extra footage that they wanted to use on something) that would trigger an emotional response. I'd be happy to volunteer! Someone just let me know.

I vote for kickstarter as well. The problem: Do they accept campaigns for medical funding?? Of course we would give them 10%. But the site is efficient, convenient, simple, trustable and very well known.

I would also be happy to contact Kickstarter about the Microbe Discovery Project to see if they would accept our campaign. They have specific rules about campaigns but I think there is some flexibility as I have seen campaigns that didn't exactly meet the criteria.

 

[geraldt52]

I love this idea! I think we should get in touch with Ryan Prior/Nicole Castillo with the Forgotten Plague/Blue Ribbon Project and see if they would be willing to develop a very short video for us (maybe they have extra footage that they wanted to use on something) that would trigger an emotional response. I'd be happy to volunteer! Someone just let me know.


I would also be happy to contact Kickstarter about the Microbe Discovery Project to see if they would accept our campaign. They have specific rules about campaigns but I think there is some flexibility as I have seen campaigns that didn't exactly meet the criteria.

Wow, don't let a volunteer get away!!!!

Seriously, SB_1108, that's a very generous offer. I think both ideas are worth investigating. We won't know if we don't ask.

The documentary fundraising project was quite successful, so maybe they can help with ideas.

I know nothing about Kickstarter, but with a quick look at the site I didn't see anything resembling fundraising for a known medical institution so I'm thinking that might not be allowed, especially if running concurrently with the Microbe Discovery Project. Maybe there's another site more geared to research?

 

[geraldt52]

Here are my ideas:
...We have a lot of potential. We all suffer. We all feel neglected by the medical community. We all hope for cure. And we are many. We are 17 million patients in the world. Even when just 0,1% of them spend 20$, we would generate instantly 3,4 Million$. And a lot are able to spend more...
.

That is what made me so hopeful when this started. It seemed doable.

For some reason we just aren't getting to enough people. I would feel so much better if we had raised $100,000 from 10,000 donors, because then I'd feel like we're reaching people and everybody is doing what they can. But less than 500 donors out of 17 million patients is definitely discouraging.

 

[beaker]

I vote for kickstarter as well. The problem: Do they accept campaigns for medical funding?? Of course we would give them 10%. But the site is efficient, convenient, simple, trustable and very well known.

I don't think kickstarter does non profit /charitable fund raising.
Too bad.
A lot of people gave to see some guy make potato salad.
*shakes head*

 

[Esther12]

Maybe the idea of a quick PayPal button is a good one? Something which could let people avoid entering their details on an unfamiliar site, but instead just quickly choose the amount to donate and click to send?

If we are trying to get more small donations, the fewer delays/inconveniences the better.