Fundraising for Dr Lipkin's study.

[A.B.]

It's becoming painfully obvious that some assistance from wealthy donors is the only way we're really going to get this thing off the ground. Snow Leopard, would you know who the wealthy donors were for the Rituximab study? Perhaps if they were helped to understand the importance and significance of Dr Lipkin's study, they would provide similar assistance here?

Drew

The study is speculative though. With Rituximab we know that if it's confirmed to be effective then it will make a huge difference. With the microbiome study we don't know whether anything useful will come out of it. I still think it's important but it should be presented as study for many conditions because we know the gut is involved in many diseases.

 

[acer2000]

I think that the effort might be more effective if it was using one of the mainstream sites like indiegogo or even a more science focused one like experiment.com. It would expose the project to a much larger audience of members looking to fund projects via their emails and recommendation engines, those sites have more virality baked into them, and they get a lot of media coverage. For whatever reason those established crowdsource sites lend a bit of legitimacy to the projects they host, especially for people not already familiar with the cause. I also think one of the reasons why the Canary in a coal mine project did well is because Jen (a patient) did a really excellent video that was relatable to other patients. The current website for this project is excellent, but it is very focused on the science and the authority and experience that Dr. Lipkin brings to the project. Those are great things to emphasize, but maybe we should add more appeals from patients themselves. Perhaps it could help in fundraising?

The other thing that might help would be for Columbia themselves to use their fundraising arm to help drum up support from their donation network. Big Universities are usually very skilled at raising money from alumni. Or other ME/CFS groups could attempt to generate support using their networks.

Also, what is the status of getting even some money from the NIH for this project? It seems like not a day goes by without me hearing about some big grant to study the micro biome in an illness. It seems like there is interest and funds in the scientific community to investigate this - why is our project left out?

 

[Sean]

It is a bit of a mystery to me why this study has not received more support from patients, though some quite plausible reasons have been raised so far on the thread.

I don't think Columbia's donation process is helping. Every extra mouse click and data entry you require of potential donors is another barrier to them donating.

Do we need to set up a formal registered charity for the sole purpose of generating donations for this project?

Given we do not reach the target by the end of this year, then what is the minimum amount the project needs to even get started (so we have more time to find the full amount)? Perhaps we could sell it like that, campaign for the minimum amount to get it up and running, then work on the rest afterwards?

 

[MonkeyMan]

Great suggestions and ideas, everyone! Keep 'em coming!! Here is my attempt to consolidate these suggestions for how we (as a community) could expedite this process (besides continuing to donate).

1) Contact Columbia (but who specifically?), explain the reasons why this fund-raising effort is going so slowly, and propose (or in some cases, re-propose) ways to expedite it:

• Allow the appeal to appear on sites such as indiegogo.com and experiment.com
• Enable donations through PayPal (so that every website or blog writing about the project could have a donate button) and through SMS.
• De-emphasize the ultimate goal of 1.27m and focus on a more achievable goal, perhaps one that would allow the study to get underway.
• Reduce the number of screens/forms the potential donor needs to wade through in order to make a donation.
• Leverage Columbia’s fund-raising arm.

2) Identify and approach (1) deep-pocketed donors (individuals, organizations, and maybe even foreign countries), including those who helped fund the Rituximab study, and (2) patient-advocacy organizations for other disorders that may benefit from this study:

• Emphasize that disturbances in the gut biome are increasingly being recognized as the source of many diseases, and that the results of this research may help millions of people – not just CFS patients, but patients with other chronic, serious diseases such as obesity, metabolic syndrome, and type-2 diabetes; inflammatory bowel diseases (e.g., Crohn’s disease and ulcerative colitis), and central nervous system diseases (e.g., depression, multiple sclerosis, Parkinson, autism).
• Point out Dr Lipkin’s credentials and that, as Sasha put it, that we could be a year away from identifying the cause of this disease and getting mainstream recognition and govt money pouring in, and another year away from viable treatment.
• For the patient-advocacy organizations, ask them for help in generating support using their networks to advertise this campaign (in their newsletters, magazines, and websites).

3) Set up a formal, registered charity to generate donations for this project:

• This charity should create a visible, effective marketing campaign, including a video with one or more CFS patients appealing for support, similar to the one that Jen did for Canary in a Coalmine.

Comments and additional ideas are most welcome.

Drew

 

[Sidereal]

I think part of the problem is that all this microbiome stuff seems "way out there". Most people don't understand the significance of this work and doctors are not helping matters by pooh poohing everything that wasn't on the radar when they were in medical school.

 

[Bob]

I think part of the problem is that all this microbiome stuff seems "way out there". Most people don't understand the significance of this work and doctors are not helping matters by pooh poohing everything that wasn't on the radar when they were in medical school.

lol, no pun intended?

 

[South]

@drewmaster your post #24 in this thread so clearly states many excellent points. If only you knew a name at columbia to give some of these suggestions to.

I am planning on making a holiday donation, and am hoping that the many steps the Columbia website site has to make a donation won't frustrate me - the comments about that are worrisome.

You wrote your post so well - I wish the powers that be at Columbia or in other helpful places could just see your post and read some of the ideas.

 

[Sean]

Allow the appeal to appear on sites such as indiegogo.com and experiment.com

Enable donations through PayPal (so that every website or blog writing about the project could have a donate button) and through SMS.

I find it difficult to believe that an organisation as big and experienced as Columbia University cannot readily accommodate these easy online payment methods. It is not exactly difficult, and surely it is to their advantage to do so. We can hardly be the only project they are running that would benefit from such funding sources.

 

[adreno]

I find it difficult to believe that an organisation as big and experienced as Columbia University cannot readily accommodate these easy online payment methods. It is not exactly difficult, and surely it is to their advantage to do so. We can hardly be the only project they are running that would benefit from such funding sources.

As I understand, these suggestions have been made before, and Columbia was not interested? They claimed something about paypal donations being insecure (which they are not).

I assume someone from the team has been in contact with them already.

 

[geraldt52]

I do completely understand that people would like a Paypal option, and a one-click option, but for the life of me I don't understand what is so difficult about the current Columbia site that would put someone off donating.

I've made 4 or 5 separate contributions now, and it surely didn't seem like a big deal to me...and I have my share of cognitive issues. I would bet that nearly all the donations received are from patients or close loved ones. So there's a possibility of getting one's life back, or having a close loved one get their life back, and a minute at the keyboard is too much trouble? What am I missing?

I do wish that PWME would get it out of their heads that someone from the government, or some philanthropist, is going to come to our rescue, and instead realize that this might be our best chance to help ourselves. If someone else were going to help us, wouldn't they have helped at least once over the course of the last 30 years? Forget about the general public not helping, 850 donations out of the millions of people who are ill? Not even a $1 donation? Why is that?

We can wish for something better, but we have what we have. And what we have is arguably the world's foremost virus hunter who wants to help us. I have to say that I'm really baffled that the response has been what it is.

 

[adreno]

I do completely understand that people would like a Paypal option, and a one-click option, but for the life of me I don't understand what is so difficult about the current Columbia site that would put someone off donating.

It's fine that you disagree, but it is a fact that there are not as many donations coming in as we want. So what are the reasons for this?

We can wish for something better, but we have what we have.

Your own words. We can wish that more people were contributing, but they aren't. So we have to accept that something we're doing isn't working. What people are suggesting in this thread is how we might streamline and optimize campaign exposure as well as donation convenience.

Making the donation process easy increases the number of donations. That's just a fact, and it's a simple thing to do.

There are also lots of people who access the internet on mobiles. Are these people able to donate? You think people on phones are filling out forms?

60 Percent of Online Traffic Now Comes From Mobile


If you do the same as you've done before, you'll get the same results. If you want different results, change what you're doing. But it's all academic anyway, if Columbia isn't interested.

 

[geraldt52]

It's fine that you disagree, but it is a fact that there are not as many donations coming in as we want. So what are the reasons for this?

I don't "disagree" with any of the suggestions made, and I can't see where I implied that, so I'd be the first to applaud anyone who volunteers to help and gets any of the suggestions implemented.

As to your question about "reasons":

I don't have much doubt that the public at large isn't donating simply because they don't care, they aren't afraid of ME affecting them, or, they don't even think ME is a legitimate illness. If donating were as simple as blinking their eyes, I suspect that they still wouldn't donate. I stand ready to be surprised and elated if someone can implement one-click donations and proves me totally wrong.

It's the one million plus PWME that have surprised me. Where are they? If the Columbia site is so cumbersome that it would discourage someone who is ill, but can afford at least a few dollars, then I can't even relate to whatever illness it is that they have. I've been sick for 30 years and if I had to pace myself for 3 days in order to "fill out forms", for a chance at getting my life back, it wouldn't stop me from donating. As it is, I seriously don't think it took me much more than a minute or two to make a donation on the Columbia site.

 

[adreno]

Well, where are those PWME? How many of those estimated 1 million follow research? How many of them are active on forums such as this one? Very few.

We are just not getting the exposure that we need.

 

[Jonathan Edwards]

As I understand, these suggestions have been made before, and Columbia was not interested? They claimed something about paypal donations being insecure (which they are not).

I assume someone from the team has been in contact with them already.

Actually, Pay[pal does seem to be insecure. I had $15,000 withdrawn from my credit card account for football tickets following a paypal transaction - within hours! I never use it.

The alternative can be a real pain though and I hope it is not slowing things down. I tend to suspect not - I fear it is apathy and misinformation in the media etc.

 

[geraldt52]

...We are just not getting the exposure that we need.

On that we absolutely agree. It's hard to break through apathy and misinformation when it's been institutionalized. A lot of things have been tried, and are being tried, but it is a slow slog, and it's hard for sick people to advocate for themselves to get the exposure needed.

 

[A.B.]

I have also heard bad things about paypal. Such as freezing accounts with large sums in it.

 

[MonkeyMan]

@drewmaster your post #24 in this thread so clearly states many excellent points. If only you knew a name at columbia to give some of these suggestions to.

I am planning on making a holiday donation, and am hoping that the many steps the Columbia website site has to make a donation won't frustrate me - the comments about that are worrisome.

You wrote your post so well - I wish the powers that be at Columbia or in other helpful places could just see your post and read some of the ideas.

Thank you, South ... I really appreciate the kind words! Yes, hopefully the powers that be at Columbia will read this thread and it will spur some changes and finally get this thing moving.

Drew

 

[Forbin]

Well, where are those PWME? How many of those estimated 1 million follow research? How many of them are active on forums such as this one? Very few.

We are just not getting the exposure that we need.

Well, one factor that must be limiting the response is that (according to the 2006 CDC press release below) although "CFS affects more than 1 million Americans," 80% (or 800,000+) remain undiagnosed.

http://www.cdc.gov/news/2006_11/cfs.htm

So, it's not just that they aren't on the internet or that they don't care - they've never been diagnosed.

[Also, given the past stigma that the weak efforts of the NIH, CDC and other entities have managed to attach to CFS, I don't doubt that a significant percentage of patients have chosen to avoid getting such a diagnosis / label.]

 

[Sean]

Paypal, and similar, no doubt have their problems, and I don't know their system and legal structure in detail.

But presumably donated money does not have to be left sitting in those accounts. It can be transferred into more secure accounts more or less immediately (certainly on a 24 hour cycle), so the risk can be minimised.

I remain of the view that every extra click and bit of data entry required is a disincentive to donors. Just human nature. However it is done, it has to be a quick and easy process, and the smaller the individual donation the quicker and easier it has to be for the donor to get value not just for money but also for time and energy spent.

Seems to me that the Columbia donation system is predicated more on the old one-off large donations practice. Not on many small micro-donations, which is the practice we are trying to make work.

Also agree that the response from the patient community is disappointing. We can hardly feel let down by the general community if we are not prepared to support this stuff ourselves.

 

[Forbin]

If one is really averse to using Columbia's online donation system, then according to this webpage: http://cii.columbia.edu/donate.aspx?Axul69 ...

Contributions may be sent directly via post to

The Center for Infection and Immunity
Columbia University
722 W. 168th Street, 17th Floor
New York, NY 10032

I would assume that if you indicate Lipkin ME/CFS/Microbiome Study on the check (or make the check out to that) then the donation would go to the right place.