35 replies to this topic

[manofsan]

I'm sure by now you've all heard of Kickstarter, a web portal which allows people to post videos making appeals for funds, while using Amazon's payment processing system to allow people to easy make payment contributions towards these various appeals/projects.

http://www.youtube.com/watch?v=nK8zEDdCvd4

Recently, videogame maker DoubleFine raised a record $1M in 24 hours, appealing for funds to help them make a particular videogame:

http://au.pc.gamespy.../1218408p1.html

Appeals are only posted after Kickstarter approves them. For some reason, they don't allow appeals relating to medical research. (Not sure why - legal liability? I'll have to find out more.)
But what if they did allow them? Or what if some other web portal were to specialize in fund-raising appeals for spontaneous projects on medical research? ("CureStarter"?)

There are plenty of famous high-profile diseases with famous high-profile victims which have managed to erect a strong fund-raising movement around them.
But what about all those little guys out there, who have an illness they'd badly like a cure for, but they're just not important enough to the medical or money-giving powers-that-be?

What if you could have a "CureStarter" site, which would allow people to spontaneously self-organize to issue appeals to the public to donate funds, donate researchers or research time, donate their personal genomic data, donate personal medical logs - donate whatever - so that their disease could see progress for a cure.

A CureStarter site could help empower people, and get research going that might not have otherwise happened.

What do you think? Comments? Critiques?

[Ben]

Surprised no one has posted here.

No. 1: This is an awesome idea. One of the best and simplest I've seen here in years. And maybe one that could have an enourmous effect on the science of aging.

No. 2: Don't let it stagnate as an idea. This needs to be made.


Also, people could post kickstarter projects requesting funds to make a promotional video / full campaign for their CureStarter project (maybe a good way to get around KickStarter's bizzare rule).

[Link]

The thing with Kickstarter though is that what makes it so successful is that people who pledge are promised something in return.

A pledge on Kickstarter is not really a donation it's more of an advance, people aren't just giving their money away they're merely making a pre-payment that gives the company the funds to produce whatever product or service they need funds for, so they can produce the product for the pledger.

With donations to scientific research you're asking people to give up something for nothing in return.


I'm not trying to put you off or say it's a bad idea, just that you have to realize the reason that DoubleFine raised $1M in 24 hours is because people want to play the game, not because they're particularly empathetic towards struggling adventure game producers.

[manofsan]

I hear what you're saying, but I'd say that when it comes to health, we're all intertwined in a fundamental way. We all benefit from the greater advancement of medical knowledge.

Using anti-aging research as an example, wouldn't we all (or at least many of us) want to see progress in delaying aging? We all suffer from aging, and we'd all benefit from living healthier longer.

With Kickstarter, the pledges have to cross a certain threshold in order to be processed. If there's not enough pledges, then it fizzles and no payments are taken. So in the CureStarter context, likewise you'd have to scope out the costs associated with a certain type of medical research, and then the number of pledges would have to meet that threshold, or else it fizzles and no money is forthcoming. This might still allow certain diseases to make the grade and get research done to achieve some progress, when they otherwise might not have gotten anywhere.

I guess this direct-appeal-to-the-masses thing is a form of disintermediation. Instead of announcing and holding a marathon or telethon for a particular cure, here you're reducing the overhead, and streamlining and simplifying the act of donation to reduce it to almost an "impulse buy" (ie. "impulse donation"). Click and donate. You're not relying on the NIH, you're not relying on this or that foundation, you're not relying on WHO, you're not relying on CureTrex corporation - you're just making a direct appeal to the unwashed masses.

Perhaps it might also be possible for different afflicted groups to pool their efforts. If Gene XYZ23 is associated with 4 different known diseases, each of which is a small demographic, then perhaps all 4 groups together are not so small, and they could jointly achieve/attract significant funding for a common investigation into GeneXYZ23.
Research arbitrage?

Consider that with our imminent genomic future, the day isn't far off when we'll each be receiving that genome report, and then wringing our hands when we see that we've got GeneXYZ23 on our list of reported defects. ("Me? I have GeneXYZ23? Oh no! Why'd it have to be this? Why'd it have to be me? What am I going to do? Just sit tight and hope it won't cause me any problems down the road?")
At that point, maybe research arbitrage might become highly desirable.

Edited by manofsan, 19 February 2012 - 07:53 AM.

[Mind]

The thing to think about is how this model of crowd-sourced funding would be different than what Longecity, SENS, and Methuselah (and any number of other non-profits) already do to raise money. What would make it more successful than what we already do?

Simplicity? Donating to Longecity projects is already super-simple. Click and donate.

Marketing? Is the "Curestarter" name much better for getting attention?

Return on investment? Similar to what Link alluded to above...maybe the people who fund disease research could get a claim on the IP/patents/therapies and have money returned to them in the future. For me, I donate because I believe it will be good for me in the future...that I will benefit from the research eventually in some way...not because I would see a direct monetary return on my investment. "Curestarter" would have a chance at being highly successful if the people who funded it would get "cured" of their disease and/or they received some monetary benefit.

[manofsan]

Here's a report by NBC news on Kickstarter, and similar sites like IndieGo.com, which was started by a couple who got funds for In Vitro fertilization through an online appeal:

http://rockcenter.ms...w-ideas-to-life

Obviously, that couple's desire to have children for themselves via InVitro fertilization isn't providing any return back to those donating money. It's about charity, and tugging at peoples' heartstrings. Strangers helping strangers.

Here's an article on CIO.com about how Kickstarter is helping to achieve 'consumerization' of project funding (aka 'crowdfunding'):

http://blogs.cio.com...cts-kickstarter

http://www.cio.com/a..._to_Kickstarter

So 'consumerization' on the other hand does imply people wanting something in return for their money.

Maybe people could become part-owners of intellectual property resulting from research. Maybe it could become like a stock market, where you're betting on the value of certain research by putting money into funding it. (That's one way to foil patent trolls)
Or maybe your ROI comes in the form of a cure, or from the advancement of medical knowledge which helps all of us.

Either way, it's about inviting participation of the wider masses, rather than just a narrow bunch of enthusiasts.

Edited by manofsan, 20 February 2012 - 06:53 AM.

[Musli]

I think it's a great idea and one that should be developed asap. With the internet so ubiquitous, crowdsourcing is teh future.
Medical groups would add their existing projects (they would have to be accepted by admins first to avoid scams) and people would donate to the projects they like best (because they suffer from the disease in question, or know people who do, or simply because a project seems the most plausible of all). It would also help philantropists to have all the projects that need funding listed in one place, so they can easily choose where to donate or what to fund. Obviously, CureStarter should include all diseases, not just the diseases of old age. Nowadays, you have to avoid selling cures as strategies for life extension to get funding. That's how it is, and it won't change for the time being. It's the people in minority, like us, that have to adjust, not the other way around. Plus, it's not like helping curing other, often life-changing diseases is a bad thing, right? ;-)
I could chip in if more people were interested in creating such a platform.

Edited by Musli, 20 February 2012 - 10:59 PM.

[Mind]

I registered curestarter.org, just in case this project goes forward.

[manofsan]

Cool, man - let's continue with the thinking process.

So then this is the place you'd go to when your regular traditional conventional medical treatment route has not worked out.

In order for 'consumerization' to work, the system that interfaces the funds-seeker to the consumer/donor has to impose some order. As Musli said, you'd need a review panel - a medical review panel - to review these videos and properly categorize them. You'd have to impose requirements that the research group declare themselves clearly and transparently, in order to avoid scams. Postings from like-minded research groups should somehow be affiliated together, so that consumers can do comparison shopping.

But are we just talking about funneling money here, or shouldn't it also be about the pooling of resources to meet these research demands/needs?

What I was also wondering about, was whether/how research appeals could be linked to or hooked up to spare capacity of research labs and researchers. Think like a match-making service that hooks up those with needs to those with the ability to fulfill those needs.
So that isn't quite the same as a job board, but it's perhaps a few steps removed from that?


So presumably this would all run on a CMS (Content Management System) with workflow capabilities. That's what the website engine would be. The videos could all be posted on Youtube.

Edited by manofsan, 21 February 2012 - 07:26 AM.

[Musli]

Match-making is a good idea, but not really a must at first. I don't think there's many people/organizations with novel ideas but no labs at their disposal (only SENS comes to my mind, but they have all the bases covered).
The most important part is, of course, the engine/the platform/the system. It has to have many functions, but also be easy to use and navigate. Profiles, especially those belonging to advertisers, should be rich in information. There would be a search engine implemented, as well as sorting by categories (infectious diseases, congenital diseases, etc).
I don't think videos should be required since it's a lot of work and sometimes it will be hard to present a project in a video. What's more, medical projects don't have to look cool, as opposed to games, etc. on kickstarter. Substance over flash. It would be up to researchers how they decide to promote their project - videos, graphs, charts, pictures or pure text.
What's also very important is that the site should be safe, trustworthy. Both researchers and donors have to be sure there's no catch, that the portal is legit. It will take some time before all the target users (researchers, philantropists, casual people willing to donate) know about the site and trust it, but it should eventually be a success.

Edited by Musli, 22 February 2012 - 10:30 PM.

[brokenportal]

Heres what I see on this:

1. Are there other similar projects? Can you check around, invite good candidates to this topic that might help build this one, and, list projects (if any) that we might consider teaming up with rather than starting a new one. Check with Sergio Tarrero in the Transhumanism network, he was building a fund generating project. There is the United Stewardship Alliance that raises money for projects like these (and more broadly) There are some indefinite life extension fundraisers that might get in on this in causes.com, and I’m pretty sure there is a guy that Sven was talking about a few years ago that was working on a project like this. See if you can track him down and invite to the discussion if you can. Maxlife invests widely in indefinite life extension research, and the Campaign for Aging Research funds a lot of projects that are a bit broader than indefinite life extension but are still pretty centered on things like SENS. Maxlife might have some input, and the latter may be the wider research version you are looking for already.

2. But, like Mind says, this is what Longecity basically does anyways. People give money to Longecity and Longecity converts it into research. If we had many times the money we could fund many times the research. So why not a kickstarter campaign that is something along the lines of, “Help the advocates at Longecity raise a million dollars to support anti aging awareness.” Or, if they wouldn’t accept that for the research, or you don’t think they would, then how about a specific non directly research related project or two. You would want to brainstorm on that, there are things like: touring lecture bus, activist center, really expensive nice website development, hire a marketing agency, an indefinite life extension talk show, hold a really nice well promoted conference, etc.

3. If you really want to look further into building something like curestarter, it sounds like it’s going to take a lot of time, money, and headaches. If you look deep into yourself and decide that you’re willing to see it through, contact the right engineers and stick to a set of goals etc., then get together with a few like minds, or you yourself write up a preliminary proposal, with at least the basic steps, and the best ball park figure on price that you can, and let us know here. I know it’s a tight schedule but if you can do it within a week then we can consider it at the next budget meeting.

[Mind]

One similar effort that cropped up recently was opencures. Reason could probably give advice on how that went and if we could team up.

He also mentioned http://www.petridish.org/ in his most recent newsletter.

Edited by Mind, 12 March 2012 - 06:16 PM.

[reason]

One similar effort that cropped up recently was opencures. Reason could probably give advice on how that went and if we could team up.

He also mentioned http://www.petridish.org/ in his most recent newsletter.

OpenCures: good idea, but clearly I'm not the person to be leading it anywhere past stage 1 (the protocol library). A definite lack of material support for anything more than a slow accumulation of data in the form of protocols - which I have been neglecting in favor of other projects in the community in recent months.

Petridish is a angel-backed serious attempt to be the Kickstarter for science. These are people to watch, as they have money sunk into it and are going somewhere. Whether that's proving that their way is the wrong way or not remains to be seen - it's a hard problem, as the Longecity crowd knows.

I encourage Longecity to reach out to Matt Salzberg, and point out that there is some form of potential collaboration here. They would certainly benefit from the enthusiasm and experience of the longevity science advocacy community if they could become a center for the sort of projects that we'd like to see running.

http://www.mattsalzberg.com/

http://techcrunch.co...earch-projects/

Though of course it's an open question as to whether they're interested. They may, like the DIYbio community, be quite hostile towards aging research and/or leary of outright medical research for regulatory reasons.

[manofsan]

If said research is being done using animal models, then why would it automatically have a human legal liability concern?

Also, why are DIYbio hostile to anti-aging research? I've never heard of this, and I don't see why that should be the case. If anything, they are closer to the transhumanist viewpoint than the average person.

[reason]

The public facing DIYbio leaders largely have meme sets related to:

- plant biology
- environmentalism
- help the third world with agriculture, not the first world with medicine
- don't do anything that will prompt more regulatory attention

So you can probably see where that will end up. The people who are in favor of DIYbio medicine and cell research are much less vocal. At some point the movement will split.

[Ben]

2. But, like Mind says, this is what Longecity basically does anyways. People give money to Longecity and Longecity converts it into research.

I'm not sure you understand marketing.

1. get a catchy name and register URL (done) (+$100 for 10 years)

2. build a really nice web 2.0 site (see kickstarter's beautiful interface.) (+$5000)

3. Create a media release, post it out to all the H+ bloggers / members of the H+ community / health bloggers, etc. (+$300)

4. Wait for it to get picked up by major media outlets (precipitate this by paying a professional writer to write an article on the site--some kind of feel good piece--and then submitting that to online newspapers (huffpolitburo and the Daily Bolsheveast come to mind.))

(total $5400 not including monthly hosting taken as a % when donations start rolling in.)

5. Profit.

This whole concept should be a Longecity fundraiser. We need to be thinking how we can leverage / amplify the current resources we have.

Edited by Ben, 14 March 2012 - 03:33 PM.

[Musli]

Exactly, Ben. Listen to the man, guys!

[Mind]

Ben & Musli, just wondering if you could help out with #2. Brainstorm a design/layout, maybe something similar to kickstarter or petridish, but obviously something somewhat different because otherwise we wouldn't be able to differentiate ourselves. It would be great if you could investigate various software/web designers to get a good deal. There might be some that will do it much cheaper for a non-profit. Think about what kind-of database management we would need. A novel interface for contributor interaction would certainly help the website/effort become "sticky".

[Ben]

I'm thinking that we post a job on Elance / freelancer / odesk and then select the most cost effective bid.

Whether we then take up the project or not can be decided. After going through this step though, we at least have a figure to aim a fundraising / VC campaign at. If it ever happens I volunteer to help with all this (posting job, selecting candidate, creating campaign media) except the VC prospecting.

[Mind]

Has anyone posted a job on Elance / freelancer / odesk yet?

Do we have a "killer app", novel interactive tool, or something to set us apart from other similar websites? I have not come up with anything yet but I haven't really set my mind to it either.

[Musli]

I think it could be easier for us to join forces with Petridish.org than to create the whole thing on our own.
What I'm thinking about is funding http://www.petridish.org/med/
It would have to have a different, more formal design since the current one is suitable for 'fun' science projects (like all those animal things present now) and not for serious scientific endeavors like looking for cures for various diseases (age-related diseases included) etc.
Why would it be a good idea ? Well, let's see:
1) Petridish.org has already a working platform = no need for building it from scratch
2) It's already fairly well known = less money needed for advertizing (if any at all, reasons below)
3) More people will visit the website, which is always good and thus petridish owners may take further advertizing expenses upon themselves
4) it's easier to modify and add a section to an existing website than to create a whole new website from scratch = will cost us less money
5) The name "petridish" is associated mainly with medicine (when you think about culturing cells you think about stem cells, drug testing, observing diseases etc.), therefore it's a great fit for projects focused on cure searching and its founders should be more than happy to help us.
Here's a recent interview with Petridish's CEO - http://singularityhu...we-ask-the-ceo/ After reading it, I'm more than convinced we should collaborate with these guys.

[ayu]

What might be cool is a crowdsourced way to conduct studies.
e.g. I send you a bottle of unlabled pills and you take that once a day, and write down observations and measure your blood pressure, sleep or whatever.

It'd be challenging to control for all variables, but this would be social, fun, and can yield knowledge -- all good things that are easily marketable to the general public.

[Ben]

I think it could be easier for us to join forces with Petridish.org than to create the whole thing on our own.
What I'm thinking about is funding http://www.petridish.org/med/
It would have to have a different, more formal design since the current one is suitable for 'fun' science projects (like all those animal things present now) and not for serious scientific endeavors like looking for cures for various diseases (age-related diseases included) etc.
Why would it be a good idea ? Well, let's see:
1) Petridish.org has already a working platform = no need for building it from scratch
2) It's already fairly well known = less money needed for advertizing (if any at all, reasons below)
3) More people will visit the website, which is always good and thus petridish owners may take further advertizing expenses upon themselves
4) it's easier to modify and add a section to an existing website than to create a whole new website from scratch = will cost us less money
5) The name "petridish" is associated mainly with medicine (when you think about culturing cells you think about stem cells, drug testing, observing diseases etc.), therefore it's a great fit for projects focused on cure searching and its founders should be more than happy to help us.
Here's a recent interview with Petridish's CEO - http://singularityhu...we-ask-the-ceo/ After reading it, I'm more than convinced we should collaborate with these guys.

I think it'd be a good idea to have control--over branding and operations. The most valuable contribution will not be the money that the Imminst donates, but rather the time of the professional members of the forum.

[reason]

Here's another one to look at:

https://www.microryza.com/

[Logan]

The thing with Kickstarter though is that what makes it so successful is that people who pledge are promised something in return.

A pledge on Kickstarter is not really a donation it's more of an advance, people aren't just giving their money away they're merely making a pre-payment that gives the company the funds to produce whatever product or service they need funds for, so they can produce the product for the pledger.

With donations to scientific research you're asking people to give up something for nothing in return.


I'm not trying to put you off or say it's a bad idea, just that you have to realize the reason that DoubleFine raised $1M in 24 hours is because people want to play the game, not because they're particularly empathetic towards struggling adventure game producers.

I'm not so sure, I think the donation goes straight into the person's account. Plus, if you give them the gift, you are going to have plenty of money to make up for it with the donations you get if you are that successful.

Some of those projects do get donations simply because they think it is a great idea and want to contribute. And so what if the incentive is to have the product available to them on the market one day soon, isn't that how it should work?

People who donate to cures or life extension research will do so becaue they want cures and life extension.

[brokenportal]

I really don't see that we are in a position to create our own platform at this time, unless somebody can secure a large amount of money for it, and even then, like Musli, Reason, and others are saying, it seems best to team up with a place like petridish.

We can start by submitting a project to one or more of them. Can somebody read through the specifics at petridish to start with, and see what the guidelnes for submissions are? If we can apply for a grant that is a bit more general then we'll have somebody write that up and we can weigh in on it before posting here. It seems there is a chance we could get money to combine with this years, or for next years research fundraiser. We may be able to support the science initiative in general, or a part of it.

Then we could also see about arranging to act as an agent of sorts for other indefinite life extension projects and help people submit their projects to petridish and other similar places.

This topic also correlates with this response here.

[Florin]

CureStarter seems to be a good idea for two reasons. First, it seems (please correct me if I have the wrong idea) to be focused on funding research that seeks to actually cure disease instead of merely delaying disease development and progression. And second, it's focused on curing disease, not on curing aging. This distinction is important, because it will appeal to the mainstream and do exactly what we want it to do if it's successful—cure aging (or at least parts of it) by focusing on curing age-related disease. Since the only way to cure any age-related disease will likely involve damage-repair research, this is another "sneaky" way to fund SENS.

I have a few other suggestions, ideas, and observations:

• Is this a for-profit venture or non-profit? If it's for-profit, a ".com" domain needs to be registered.
• Possible partners/funders: Methuselah Foundation (My Bridge 4 Life funder), Theil Foundation/Peter Theil (SENS Foundation funder), FasterCures, and Longecity (of course)
• This will be a complex project that will have to be developed by a professional team.
• Since the Rare Genomics Institute seems to do the same thing for rare genetic diseases as CureStarter proposes, CureStarter will probably have to focus exclusively on age-related and infectious diseases if it doesn't want to compete with RGI.
• The name "CureStarter" might be too similar to "Kickstarter."
• One possible downside is that there might not be too many research ideas to fund (e.g., crowdsourcing's failure to provide any insight into breaking the cross-link glucosepane).
• Should the 's' be capitalized (i.e., "CureStarter" or "Curestarter")?

[Mind]

If we wanted to submit a proposal to petridish, kickstarter, or both, or start up curestarter, perhaps this could be a project worth funding? http://www.longecity...post__p__514083 More rat studies (and PALS monitoring) on lipofullerenes.

[Mind]

And another possibility here. A small amount of money could go a long way. http://www.longecity...post__p__514100

[Florin]

Whatever projects are undertaken, the emphasis should be on curing or at the very least significantly retarding specific age-related diseases, not on longevity. Otherwise, these projects won't attract mainstream support, and as a result, the number and size of projects will never grow significantly.

If some of you are still not convinced that the vast majority of the mainstream aren't interested (or at least it's extremely difficult to get them interested) in curing aging or extreme longevity, I propose a test to definitively decide this issue. Create two kinds of projects; one kind would emphasis curing aging or extreme longevity while the other kind would emphasize curing specific age-related disease. We'll know exactly what kind of projects the mainstream prefers by looking at how much funding each kind of project receives.

David Roberts and I conducted a similar kind of marketing experiment a few years ago on Facebook, but it had to be stopped due to the high cost of Facebook ads. We setup the following groups:

• CURING AGING is possible in our lifetime
• HUMAN REJUVENATION is possible in our lifetime
• CURING AGE-RELATED DISEASES is possible in our lifetime

While this experiment didn't produce statistically significant results due to a relatively low sample size (i.e., members), there were more members in the age-related disease group. Another problem may have been the possibly inconsistent use of ads (e.g., advertising one group more than the rest). Furthermore, the content was the same; only the group names were different.