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.
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...
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.
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 
