Jen Brea $100,000 crowdfund for 2018 #MEAction activities

I think engagement is always good.
I appreciate you are all busy but it might be worth considering having a thread on here with regular updates of your work, you'll be guaranteed to get some feedback, if nothing else.

Personally it's been a while now since I visited the MEAction website, but I do read the emails I get.
I think regular updates especially with details of progress would be welcome.

I don't know, I think people will give when they can and when the see or expect to see tangible results.
Maybe the focus should be more on specific goals and results?

 

I think target-based fundraising always seems to have work best, in my limited experience. Give x, get y, etc. David Tuller’s crowdfund was very single-issue, on a topic that many feel emotional about, so was very successful.

It’s so much more difficult when, no offence to David, your goals are so much bigger and broader and pretty much “we want to fight for all ME patients to get them the care and treatment that they deserve, by lobbying government, educating medicine and generating more awareness among the public”. Or at least that’s how it seems to me. It’s really tough! I’ve donated to both the general crowdfund and the UK one though, I really hope both succeed.

 

I mean that I wonder if #MEAction looks like a general support structure that 'does nothing' ( I know! I know!) until a campaign comes along from outside and uses it. When I think of #MEAction, I think primarily of the website and the email list, and that's because when it started up, it was presented (unless this is my bad memory) as a platform for ordinary PWME to use for their campaigns, and to network. My sense of it was that it would just sit there doing nothing unless/until people stepped up and used it - which they did.

I wonder if it has grown beyond its original conception, such that it's no longer just a tool but encompasses a core of active people driving major campaigns - and also, perhaps, a particular set of assumptions and values around how to tackle all the problems around ME.

Does this make sense? (It's quite possible that I misunderstood the original concept.)

Do you see #MEAction now as not just the tools but as particular people/groups/campaigns?

 

I think the difference is that something specific is more appealing to give to than something general. The UK Biobank suffers from this, I think. They're also 'infrastructure' that does nothing until a specific research project comes along and 'activates' it. The Biobank made a bit more donations headway than usual lately in being more specific about what sort of uses could be (and have been) made of their samples. In fact, they did a live Q&A here on S4ME about it.

Thanks so much for all your hard work! We're unbelievably lucky to have you and your team doing all this. But from the outside, I wouldn't say that much of that work is visible. It's unclear how much is directly #MEAction and how much is 'external' volunteers using your platform and joining in your campaigns. The boundaries between #MEAction and those volunteers not closely involved with you aren't clear so it's unclear how much 'you' are doing (and even what you're doing).

Not sure if others agree or if this is just my own blundering and limited perception...

 

I wonder if your doing a live Q&A here would be a good opportunity not only for you to answer questions but for you to ask forum members here questions about how we see #MEAction. It might produce some helpful insights about how to boost your funding.

@Andy has organised our science Q&As (and there's one in the pipeline with Chris Ponting, for which Andy has collected questions) but there's no reason why, if you just wanted a conversation here, you couldn't start a thread yourself announcing your intention to be around for a chat about this funding issue at a certain time and take it from there.

 

Sorry, meant to tag you in the above message, @JenB.

 

That's a great idea, Sasha. I'm having surgery on Tuesday and don't know what the recovery will be like, but once I am functional again, would love to!

 

Hi @JenB . Thanks for your update. I haven't donated yet this time (although probably will do so). Regarding this particular crowdfunding campaign, there are a few issues that have kept me from hitting the Donate button. First, as an "old fossil" I am careful regarding how many organizations I divulge my email and home address to. I don't want them to end up on yet another "list", potentially resulting in unwanted mail. Also, so far I've been successful in not being "searchable" on-line. Having my name included on your website is a disincentive.

Perhaps I'm unique in this respect, but the "perks" are also a disincentive. I'd rather have as much of my donation go towards the cause as possible. Which leads to the question of how much Indiegogo's fees are. Perhaps this information should be made clear to potential contributors.

I notice you've recently added additional perks. Would it be possible to also add another category where contributors could donate an amount of their choosing with no perks (including no on-line recognition)? Or, does the existing campaign allow contributors to decline these incentives?

Personally, I think the cause is worthwhile enough on its own. I don't need to be rewarded for supporting it. The progress you've made towards awareness and recognition of ME is more than enough compensation for me. Many thanks to you and your team.

 

@JenB, wishing you the best in your recovery.

Bill

 

Sorry to hear about your surgery - I hope you have a swift recovery.

I think a scheduled convo here could be really useful.

 

I'd say there was a rise in donations after that video was posted showing the letter and petition being sent to Francis Collins, that was powerful and that is what I want to see more of. That makes me donate!! Really looking forward to hearing what next steps are in relation to NIH.
A scheduled conversation here would be super.
Best of luck with your surgery Jen & take your time getting back to things x

 

Oh gosh. We were actively cultivating and seeking projects, and then working full time on those projects to support them (advice, strategy, connections, communications, prep work, planning, project management, volunteer recruitment, drafting documents, sweat/elbow great for everything and anything needed, and then carrying the work forward when volunteers crash), as well as generating projects of our own. Last year, we didn't work on #MillionsMissing (because we didn't have the staff capacity) and there were 17 events. This year there were 300+ (100 in person). The difference? Our full-time team. The is externally visible outcome isn't self-organizing. And yet, it is ALSO true that this wouldn't be possible without the work of thousands of people. Organizing thousands requires a team of six. (And frankly, could use much more.) No organization in the world with only six employees would be able to do this much. That's the power of a community organizing model. It can't happen without the community, but it's also not self-organizing (or self-sustaining). We also have a handful of volunteers who, like me, are essentially staff, running whole projects on an ongoing basis. AND we are a platform to disseminate external projects and ideas, which is why on social media and with our website, we try to be generally supportive of everyone's work.

We have so much more work planned going forward with respect to medical and scientific outreach, and for strengthening local community, peer support, and direct support.

But we were never just a passive platform waiting for people to come to us. If we had been that, no would would have. We actively worked to stoke, support, empower, pour gasoline on good ideas and build community.

Our challenge is there are very, very few organizations in the world that follow this model. The only one I know that may be close is 350.org. They are the engine of a movement involving probably hundreds of thousands (if not millions of people). The vast majority of the work is done by volunteers, but they have a staff of of 115 people https://350.org/team. This was a touchstone for us as we were conceiving of #MEAction. So was TEDx.

The Biobank example is so interesting and right on. Investments like a biobank are much more important than any single research project. They shift the "production possibility frontier," to borrow from economics. I think we need to invest a lot more in infrastructure and capacity, which will always have a multiplicative impact. However, a biobank, like activism, is a common pool resource. Everyone benefits and it might make dozens of projects and outcomes possible, but the impact is less direct or easy to see and understand.

This is helpful and I appreciate your honesty and candor! I am sure many have this impression...I am just not sure how to change it.

 

@MsUnderstood definitely possible to donate to the indiegogo without a perk. Just click 'back it' and type in amount, and you can choose not to have your name put up publicly too

 

Also Unrest is a platform. So are Google and Facebook. So is TED. Platforms are technologies, ideas, communities. They are, IMHO, extremely powerful...but in my mind platform =/- simple tubes and pipes. Most disruptive, new economy companies are platforms. Social movements are, too.

 

And you can always change your mind later and opt out of a perk! Perks are most definitely optional and it's always appreciated when folks donate them back to the effort.

 

A very interesting pitch, especially for patients who are often broke

I guess the issue of donation fatigue sets in. It is a juggling act in a way, ask for small get small but hope to make up for it with volume, it can be hard to decide what strategy to go with.
On a slight tangent i noticed on David Tuller's first crowd funding there was more people donating then the second time around, pent up demand, perhaps? He did raise more this year but from fewer donors (and $15,000 in mystery/matching donations).

It can be, simple registers well but big also registers well, people also respond to large enterprises, cancer, diabetes and others are massively successful fundraisers who fund thousands of projects with the money. But they are also very well known for a long time.

 

Thats cool, its something that came up in my thread about David Tuller's fundraising, not to say no one appreciated the gesture but if it meant more money to make the project larger many of us would probably picked that option.
https://www.s4me.info/threads/do-feed-the-bears-at-berkeley.4415/

 

We also definitely need to cultivate grantmaking from foundations (and by that I mean not only MEAction but all orgs, researchers, etc.) It's really hard, though. I was able to secure many grants to support both the production of Unrest and our impact campaign because there's an established philanthropic infrastructure to support social issue documentary films. We're starting to apply for grants for MEAction but you realize (as with every single sector), there is a massive amount of education to do re: why this is important to invest in. 99/100, we don't fit their mandate. I imagine research orgs are facing the same/similar challenge.

 

Firstly, THANK YOU. And yes, right on. I was basically saying:



No wonder everyone was like, "Huh?"

I believe we can get substantial congressionally-allocated funding for ME in the US in 5 years if we keep going guns blazing and growing the way we have the last 3 years. (I don't know what the equivalent vision is for the UK but a part of starting to craft it in collaboration with everyone on the ground is hiring that organizer/staff person.) I can't really say that out loud, nor can I promise it. And yet, I'm pretty sure we can make it happen. I can also see the next 12 steps to get there, but you'd need to talk to me for three hours to really explain it. I have no idea how to translate that into a video, a tweet, or a marketing email. All I can say is that what happened in 2017-2018 hasn't surprised me much (I get asked that a lot) because it's been the intention, plan, and outcome of five years of work and planning. I do think the avalanche has started, though, and in a way that feels inevitable, which is something I have never really been willing to say before as I know how easy it is to slide back and for history to repeat itself. But I'm finally convinced that we have done it. Now we need to bring it home.