1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

Discussion in 'Fundraising' started by Bob, Apr 4, 2014.

  1. vli

    vli

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    SOC likes this.
  2. vli

    vli

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    That is great to know, @Forbin. Thanks a lot!
  3. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    sadly a dollar is 8 pesos worth in my country (Argentina), to donate 100 dollars, I´ll have to spend 810 pesos, wich is a sixt of my monthly income, and I´ve got a family... how much would be a reasonable amount to donate?
  4. vli

    vli

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    Hi @lauluce--at the end of the day, please only donate (or not donate!) as much as you are comfortable with doing. There isn't a "right" or "wrong" amount to donate--as the project team has always said, even $1 helps!

    There are some ideas for how anyone could help raise money for a donation: http://www.microbediscovery.org/how-to-help/
    But as we say, even a $1 helps, and it would be wrong--unethical--for us to stipulate that anyone must donate amount X for it to be reasonable :)
    aimossy and Bob like this.
  5. Bob

    Bob

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    Hi lauluce,
    Every donation helps, no matter what size.
    It's not just the amount of each donation that is important but it's also the numbers of donors that count.
    The team are going to start posting the number of donations soon.

    And I think Dr Lipkin's team can tell what country the donations come from, so it would be nice to see international interest from around the world.

    The success of the project relies on how many people get involved, in whatever way they can support the project. If Dr Lipkin sees a mass of donations coming in, whatever size, I'm sure that will encourage him to do more for our community. So if you can afford a dollar, then think about donating a dollar. And consider donating once a month, or whenever you can afford to.
    Last edited: Apr 11, 2014
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  6. Bob

    Bob

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    @geraldt52, I've asked the team to have a look at your concerns and questions, with a view to responding to you. I think every one is feeling exhausted at the moment, after setting up the website etc., but hopefully they'll be able to respond to you soon.
  7. geraldt52

    geraldt52

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    Thanks, Bob, but honestly the last thing I want is for the team to spend their time and energy for a personal response to me...so, please, don't do anything that requires any additional work.

    I'm already convinced that this is something we should do, and I'm just trying to tease out whatever reservations others might have that could influence the outcome. I feel like the more everyone talks about it the better, and somehow when there is no "news" it feels a lot like bad news.

    @Forbin made some excellent observations about how U.S. income and state property taxes being due might be having a significant impact in the early going. I hadn't even thought of that.

    I absolutely agree that the number of donors is as important as the dollar amounts in the early going, so no one should think that any donation is insignificant. Even a dollar sends the message that we are doing all that we can to help ourselves, in spite of our situation. Having said that, no one should contribute money they simply can't afford. Maybe at some point we'll manage to shame people in positions of power to help.
    Firestormm, aimossy and Bob like this.
  8. SB_1108

    SB_1108

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    I've been really disappointed with the progress thus far on the campaign. I feel like we are moving too slowly. I completely agree with Rosie26 about hiring a fundraising expert. I wonder how much that would run?

    I've mentioned this before but I think it would be helpful if we had a compelling video similar to Ryan Prior and Jennifer Brea's Kickstarter videos. Maybe we could contact them about creating something? Or maybe there is someone reading this message right now that could help us with a video?

    Maybe people aren't donating because they prefer avenues like Kickstarter for this sort of thing? Is there any aspect of this study that could be moved to Kickstarter? Maybe people don't feel like all the websites and redirects are user friendly and they change their minds or give up?
    rosie26 likes this.
  9. rosie26

    rosie26 Senior Member

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    I think if it were possible , as another option for making it easier to donate for some, would be if we had a bank account number for the Lipkin Fund where we could directly deposit into it via our own banks around the world or via internet banking. I know it would be great for me, I would donate possibly every week, 2 weeks into it, as I really believe in this research. It is huge. With a top researcher involved.

    The reason it would be great for me is that I get confused with instructions in unfamiliar sites on the internet and I push wrong buttons and I don't feel safe in what I am doing. I just am not familiar with it. Whereas depositing at a bank or doing it via internet banking is much more uncomplicated for me. I don't know what others think. I appreciate all the hard work the team have done in getting this fundraising up and running. You are to be highly commended for making this happen for us. Now we need to get behind you.:)
    Last edited: Apr 12, 2014
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  10. Firestormm

    Firestormm Guest

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    Morning :)

    There is a video of course and we now how it with subtitles in several languages I believe or very soon will (visit our website for more: http://www.microbediscovery.org/:



    We decided against using Kickstarter or another similar platform early in the campaign for one simple reason: cost. Up to 10% of donations would be taken if we opted for this method - which with research we didn't feel was what people wanted to see and for a large campaign such as this - well you don't need me to do the math. We could have declared ourselves a non-profit and reduced this cost but we are a small team, all sick, and didn't want to take on that degree of responsibility, especially when Columbia are a non-profit themselves.

    This way we are acting as promoters and by continuing to work closely with Columbia and the team of scientists who will be carrying out this project, we will be producing more promotional material and direct campaign efforts over coming months.

    Our energies now are focused on reaching out internationally to the many ME organisations in each country, asking them to help us reach individual patients, their families and friends. We plan on contacting doctors as well as local support groups - where we have been able to discover names and contact information.

    One of our team who has kindly taken on this role of organisation is currently in hospital - and we all wish him well - but we have recently been joined by two others, both from the USA, with strong knowledge of science and of the movement on the ground in the States.

    But really we are now focused on networking - trying to reach all those many groups who work at ground zero and connecting with them to try and obtain small, affordable donations but from as wide a pool as possible.

    And Columbia and Lipkin have also made it clear that they too will be working from their own positions of knowledge to seek sponsors. We work closely with those at Columbia who deal with large donations, and we hope to see in the near future better results from their own engagement efforts.

    Much of this time has been necessarily spent trying to get to know one another and to form a coherent strategy, and plan for the remainder of the campaign period. As patients we have had to educate Columbia on what we think the community needs in terms of detail, knowledge and understanding; and Columbia have been listening.

    But we also need to keep working with them in order that initial efforts, e.g. Lipkin's video appeal, David Tuller's Buzzfeed article, Lipkin at IACFS/ME etc. continue to be replicated and the campaign remains in the public eye.

    I hope to see upcoming publications that might lend substance to the efforts thus far from Lipkin and from CFI. I think the CFI presentations at the IACFS/ME conference were not as prominent in the minds of our community, as they should have been, simply because there was so much coming from those conferences: but hopefully we will have an article shortly and possible an interview with Mady Hornig that will lend additional focus the efforts pertaining to a 'Pathogen Hunt' and also the the Microbiome.

    But we are ever open to new ideas, we can't have thought of everything, and whilst I can't promise we'll follow through on all your ideas - simply because we can't do everything - I can promise we'll listen and do our best.

    I think the very best thing that people can do for the campaing right now is to share the information that we have - visit our website and Facebook pages and try to keep the information and news we do post on your own home pages to share with your friends and family along with a short personal message asking them to donate whatever they can afford: and we will continue to do our best to keep this campaign effort visible.

    Thanks.
    Last edited: Apr 13, 2014
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  11. Hope123

    Hope123 Senior Member

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    I'm focusing my energy and dollars elsewhere as I am limited in both; my efforts have mostly been aimed towards helping different groups obtain or get the chance to apply for foundation/ government/ corporate grants. That is, I have tried and am trying to convince certain groups to fund ME/CFS research on the order of ten thousands or even millions of dollars. So I'm working on the opposite of seed grants; I think we need people working on both ends, smaller funds to develop promising pilot projects and big funds for replicating or developing those ideas further.

    I'm not a natural fundraiser but I do believe in my causes. How I approach it is the same way I approach other things I am ignorant of: I look up stuff on the Internet, find who among my acquaintances can help me, and check out stuff from my local library. I also use the skills/ experience I've accumulated from past years of applying for jobs, scholarships, and grants. I experiment with different methods.

    For this specific project, one idea off the top of my head -- consider having Dr. Lipkin sign 10 (or whatever) number of copies of the DVD Contagion or write a personal note with them to the buyers and auction them off on E-bay. A bonus would be to ask Dustin Hoffman, who modelled his character after Lipkin, to sign it as well. Of course, some initial money would have to be invested to buy the DVDs but Lipkin might be willing to sign for free.

    ANother idea: buy "infectious disease" items -- see link below -- have Dr. Lipkin sign them, esp. the microbes he is involved with -- and auction them off. Who would be interested? Health care professionals, pre-meds, etc. Movie fans, etc. Think beyond the ME/CFS community.

    http://www.iawareables.com/index.php

    Edit: The movie is "Outbreak" not Contagion.
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  12. Sean

    Sean Senior Member

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    Reasonable is whatever you can comfortably afford.

    Every donation is welcome and appreciated. :hug:
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  13. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    thank you for your advice guys, I really "gut" a great feeling about this project... something tells me It'll bear fruit. `ll donate as much as I can. Believe me when I tell you It'll be possibly the only donation from Argentina, here doctors know nearly zero about ME/CFS, so there are almost no people diagnosed or properly diagnosed, to my knowledge. Among that few people, even fewer speak English and have mediums to donate electronically. This makes me happy :) Believe me folks I´ll translate the whole microbiome project website to spanish if I had the damn energy, but you know how it is, I´ve got "moderate" CFS in the sense that I work full time, but when work´s over, there's nothing left of me, it's even hard to bathe. Right now, I´m at work, calm saturday
  14. Bob

    Bob

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    "Pathogens Discovery 'R' Us - That's what we do"

    In this video (created in 2010) Dr Lipkin discusses some of the pathogen-hunting work that his team are usually involved in.
    It also shows inside Dr Lipkin's lab at the Center for Infection and Immunity.

    www.youtube.com/watch?v=FOVvfJdJtTw
    Last edited: Apr 12, 2014
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  15. Bob

    Bob

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    Brief Biography of Dr Lipkin:
    http://www.mailman.columbia.edu/our-faculty/profile?uni=wil2001
    Last edited: Apr 12, 2014
  16. geraldt52

    geraldt52

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  17. geraldt52

    geraldt52

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    Thanks a lot, @Firestormm, for the update on the many things that are going on. Maybe it's just me, but it is reassuring just knowing that things are in the works, even if they haven't shown results yet. I'm certain that many of the things you've described will yield results over time.

    Thanks to everyone else who chimed in with ideas and details of what they are trying to do. Again, it is reassuring to know that others are thinking and are trying things...no one wants to think that they are the only one still working, and that everybody else has already given up.

    I've concentrated my effort on pooling funds from friends and family so that a family member, able to take maximum advantage of the tax deduction, and able to secure a company matching-donation, can make the actual donation. In this way you can leverage the tax deduction and the company's contribution to greatly increase the amount of the donation, without increasing the net cost to any individual.

    As far as making a deposit to a Columbia bank account, as opposed to navigating the website, I did see that the website was set up so you can make periodic contributions...ie, set it up so Columbia charges an amount to your credit card each month, as opposed to you having to go on and make a contribution each month. I know a lot of people don't like to commit to that, but maybe you could make it a small enough amount that you are comfortable, and then make a separate additional donation if you find you have extra money. At least this would minimize the number of times you have to negotiate the website. I have to say that when I made an initial small donation I found the site to be pretty user-friendly.
  18. Bob

    Bob

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    It is possible to donate via check if you have a US dollar bank account.
    I haven't read any info about making donations via direct bank transfers.
    I'll ask the team about it.
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  19. Cheesus

    Cheesus Senior Member

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    Perhaps if we do manage to find large donors, it could be an idea to see if we could do a scheme where they were to match smaller donations up to their limit (e.g. if they have $20,000 to donate, then promise that on the grounds that $20,000 in smaller donations are offered). It could really get people moving to know that their money is going so much further.

    (For all those who are keeping up-to-date with my intention to win the lottery, this is what I plan on doing with my winnings ;))

    It could be slightly risky, so it might not be a good idea until there is a large network to work with. I know Jen from CIACM reached out to people regarding IOM, and she has a huge network of people via her Kickstarter updates. It might not be a good idea to go too heavy on this as people don't want to get fatigued by it (no pun intended), but as a one off it could be a real boost, just so people are aware this is actually happening. If I hadn't recently started to regularly visit this site I would be completely oblivious.
    Last edited: Apr 12, 2014
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  20. Cheesus

    Cheesus Senior Member

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    Also, are there any leaflets that can be printed off? My mum regularly attends a Quaker meeting, and I know that there are others there who have friends/relatives affected by ME. Simply leaving a pile of leaflets for people to pick up at their own discretion could help to spread the word (plus the Quakers are a giving bunch).

    I would make something myself but unless we want to look like a Mickey Mouse fundraising organisation then I think we ought to leave the digital artwork to someone a bit more skilled.
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