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

There really should be a limit to how many serious health problems one person has to suffer! Wishing you a speedy and complication-free recovery from your operation @JenB.

A couple of thoughts for when you're back on deck on the Indiegogo, to consider for any future campaigns.

I had a good chuckle at the 'dangerous activist' blanket but feedback from some healthy people I tried to nudge – ok: bully - into donating was that they found the rewards too strongly ME-themed or else they didn't really want any 'stuff' at all. Embarrassingly neither they nor I noticed any straight donation option (only found out about it here, thanks @Gecko) so maybe make this option more visible in any future campaigns?

I asked what sort of rewards would have been more attractive (to healthy people). The common thread in the answers was either no ME references at all, or just very discreet ones. Like plain pillowcases with just a narrow edging with the Rest/Unrest motif. Tea towels, coffee keep cups and reusable shopping bags with similarly discreet motifs were other suggestions.

Alternatively items without any ME motifs at all but something many ME patients would use, and that healthy people could use, too, e.g. bed socks, sleep masks, ear plugs, PJs, etc. Another point made was quality. For example organic cotton would be more attractive than cheap synthetics so we don't poison the planet while trying to fix ourselves. Fair point.

A slightly different idea was playing on the theme of shoes, more precisely jandals (or flip flops or whatever people call them in other countries) printed with the names of ME sufferers. Not sure of the practicalities but an interesting idea.

Finally some 'non-stuff' ideas. Not overly practical but maybe with some twisting they could be made to work, or spark off some more realistic ideas. So for what it's worth:

One suggestion was to let a small percentage of the donation go to sponsoring an ME-affected artist. This could be to produce some digital art (not ME-themed) that the donor could choose – or not – to print out or download. Or it could go to pay for a small piece of a larger public art work (ME-themed, possibly digital).

Another suggestion was to create a sort of memorial garden or forest with one shrub or tree planted for each ME patient, not individually named, just based on estimated numbers of sufferers. The person suggesting this was rather surprised when told how big the resulting forest would be. They'd thought in tens of thousands, not in tens of millions.

On that note, the other feedback was that people were only considering donating as a personal favour to me. They thought of ME as an obscure cause they wouldn't normally support - which just shows how necessary your work is!
 
TiredSam said:
What are you doing in Germany?

You're making me nervous ...

EDIT: Or is it just me who can see that in German?
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I also see it in German. :)

Wouldn't mind Andy visiting the Robert Koch Institute, DEGAM and AWMF to explain ME.
kiefer-sutherland-710x450.jpg

ETA: "So who of you wrote the guideline tiredness?"
 
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Hi Jen - I hope you're recovering well from your surgery and are taking it easy. Sorry it has taken me this long to respond to your posts, and there's no need at all for you to respond to these (especially while you're recuperating), but here goes...

JenB said:
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.... Organizing thousands requires a team of six... 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... 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... I think we need to invest a lot more in infrastructure and capacity, which will always have a multiplicative impact... I am sure many have this impression [of #MEA as 'passive infrastructure']...I am just not sure how to change it.
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I think that saying the kind of thing that you've said here will change it.

JenB said:
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.
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Maybe this is a generational thing but I'm probably not the only patient who hears 'online megaphone' when you say 'platform'. I certainly don't think of a platform as consisting of a community or of being an idea. I can't see how a company or a social movement could be a platform. To me, a platform is in effect just a giant soapbox that people who are interested in you keep an eye on.

It sounds as though my understanding of this is different from yours (and you're the expert in this area so I expect I'm wrong!) but if a lot of us have that flawed understanding then if you say, 'Donate so we can build up our platform', a lot of us will be hearing exactly what you don't want us to hear: 'Donate so we can get more tubes and pipes'. I wonder if similar misunderstandings about other 'new tech' terms are getting the way of people understanding what you're doing with #MEA
JenB said:
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.
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This is very inspiring and the sort of thing that would get people to see the value of donating, if you can go into it a bit.

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.
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I hope there might be some intermediate level of communication between a tweet and a three-hour convo that would do it, or at least give an indication. I wonder if it's one of those situations where the perfect is the enemy of the good: where you don't have to do the whole job of laying out the entire plan to get people to see that there is a plan, and that it's worth supporting.

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JenB said:
Hi everyone! Just wanted to update you (as you hopefully already know!) that our crowdfunding campaign is in the home stretch! We have 17 days left to reach our $100,000 goal. Any help you can offer either directly supporting the campaign or spreading the word would be much, much appreciated.

We're trying to support our team of six (https://www.meaction.net/about/team/ myself excluded – I do not draw a salary), along with tools like our events and petitions tool, our contact Congress tool, our contact Parliament tool, AND hire an organizer in the UK. I believe we'll reach our goal but it almost seems like the more successful we are, the harder it is to fundraise. I would think that with the impact that Unrest (not just the film but the massive, organized campaign behind it) and #MillionsMissing have had, and with all the success in the US Senate and UK Parliament, and all of our future plans for medical outreach and education (including accrediting Unrest for CME), this would be something many would want to support if they could. MEAction has been a major driving force behind so much of this last year's tidal shift but it seems like we haven't done a very good job of articulating that to the world. I honestly am at a loss!

If everyone on our mailing list donated US$1.50 today we'd reach our goal! Broad participation at very small amounts would get us there. Our work inspires major passion and sharing on social media. Our asks that that work be supported so that it can continue to exist does not. I know not everyone can support the campaign, even at $5, but surely everyone can share it?

I do think perhaps if we were doing LESS. If we were focused on just one, single thing, it would be far easier to fundraise. But at the end of the day, our mission is not any one, single project or program. The mission is to be the engine that powers/scales/turbo-charges the movement. That's a very hard thing to explain. All you can do is show the effect on the world. I can see it (this is a very different world than the one I entered five years ago, I think we've made a significant impact) but perhaps I'm just much to close to it? And that is not a sentiment widely shared?

Feedback, ideas, and sharing of our link very much appreciated!
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Fund-raising is an art in it self and the amount of money raised doesn't correlate to the quality of work of a given charitable organization. I think we all have heard of multiple charitable organizations that are great at raising money, but are basically just squandering it.

I believe in what you are doing, and I think almost everyone would agree that MEaction has done an incredible job. I don't think I know many ME/CFS patients that have not heard of #Millionsmissing, and I have been really impressed by how the campaign has grown just over the last year when I started getting involved with the ME/CFS community.

You sometimes seem as if you feel bad / guilty for asking ME/CFS patients to donate, as if you feel like ME/CFS patients already have enough hardships in their life, and you feel terrible for asking them to give what little they have to the campaign.

Don't.

We all know that what really matters is getting that NIH funding. The 15 million dollars we receive annually is nowhere near enough to solve this illness, no matter how many private donations come through for ME/CFS research. Everyone, including the NHS knows that funding isn't always distributed fairly or rationally. NHS funding is essentially partly a popularity contest. The more awareness / pressure patients are able to apply, the more funding, it's that simple. It's great that we have a lot of organizations which are raising money for ME/CFS research, but the awkward reality that patients have to face is that if we want to see some sort of decent treatment in our lifetime, what we need is that 100 million dollar++ yearly funding from the NIH, and the only way we will get that funding is by doing more advocacy and making more noise, which is EXACTLY the sort of stuff MEaction is doing.

I know you want to use your limited time and energy on actual work, not ''wasting'' it asking sick patients for their money. But fund-raising is incredibly important, just try to imagine the amount of work you would be able to do if you could double or triple the amount of money raised. Money that MEaction definitely deserves.

So my my main tip is to see fund-raising in itself as an art to be mastered, and something to focus more energy on. Because MEaction honestly deserves A LOT more money than you are currently raising.

Really hope you recover well by the way Jen!! Remember to take care of your self :)!!!
 
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Facebook post from MEAction
We have so much love for our community! None of our work would be possible without each and every one of you. We hope to continue to build and grow this vibrant and diverse community for years to come as we continue to fight for ME health equality.

Thanks to your generosity, sharing and support of our Indiegogo campaign, and with just one week left to go, we've raised almost $90,000 of our $100,000 goal!!

As some of you know, last week our board member Pam Laird announced that she would match up to $20,000 in donations. This was so generous and we are so grateful for this investment in #MEAction's future. Well, I'm writing to let you know that that a second, anonymous donor has added another $15,000 to the match! This means we have a total of $35,000 in matching donations. Every dollar raised up to $105,000 will be matched, for a possible total raised of $105,000 + $35,000 = $140,000!

Of course the more we raise, the more we can do! Can you help us reach $105,000 by making a contribution today or sharing our campaign? Small amounts – $5, $10 – can add up to a big impact, especially with this match. If you have already offered your support, thank you, thank you!

Here is what we could achieve if we reach our extended goal:

Reach: Create a compelling, professional video explainer about ME to educate patients, family and the public alike.
Connect: Expand our phone and video support group and social sessions for patients, caregivers, and constituencies in our community like men, seniors, LGBTQ, etc.
Advocate: Unrest screenings and public education events in key “battleground states” for congressional outreach, like Louisiana and South Carolina.
Educate & Inspire: Extend our outreach to hospitals and medical schools to include underserved and rural areas.
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https://www.facebook.com/MEActNet/posts/2109844925964569:0
 
I’ve been privileged to serve on the #MEAction Board these last three years. Though I’ve worked in Silicon Valley and seen many high-growth start-ups, #MEAction’s progress has been one of the wildest rides I’ve ever seen. I’ve been amazed at the level of grass-roots participation and growth you’ve made happen.

When I first started writing a week ago, I was planning one last appeal to you for more donations. Instead, I have the pleasure of announcing we’ve exceeded our stretch goal of $105,000!

This means, with both matching grants, we’ve raised $150,000 to fund our work! So instead of asking you to help us cross the finish line, I have the distinct pleasure of thanking you for your donations.
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https://www.meaction.net/2018/06/26/meaction-board-member-pam-laird-celebrates-fundraising-victory/
 
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