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Canary in a Coal Mine: A film about life with M.E.

Ember

Ember

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Raising Awareness About the Devastating Disease Your Doctor Has Never Heard of

By Jen Brea
November 4, 2013 at 4:00 AM
While we could not possibly have predicted or planned this groundswell of support, I have been thinking about what lessons to take from the last ten days to share with the GOOD community.

First, storytelling can have a power far greater than any other force when the root of the injustice is a lie.

Second, it does not matter how long the status quo has existed, or how many people have tried and failed to change it. We cannot afford to stop expecting more from life than what we are given. Whatever the challenge we face, maybe it's not that the world is an inherently unkind or indifferent place, or that the obstacles before us is a fixed and immovable mountain. We must be just as vigilant about the stories that we tell ourselves.

Even with all the early enthusiasm we have built around our Kickstarter campaign, I know that "Canary in a Coal Mine" is only a film. It's not the overhaul of decades of harmful health policy, nor is it a cure. However, in order to get there, we must be visible. When we are disconnected and alone, it is all too easy to believe that we are in it alone. The strength that comes from many shouting as one voice, no matter how weak we are individually, can shake the world.
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1,374 backers
$118,002 pledged
17 days to go
 
Ember

Ember

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2,115
Canary in a Coal Mine shared a link.
I'm thrilled to announce that Canary in a Coal Mine has been selected as one of five finalists in the Paley DocPitch Competition.

What does this mean? On November 16th, we will get a chance to pitch our film to a committee of executives at USA, A&E, MTV, History, PBS (POV), and an audience of professionals in film and television, gathered at The Paley Center for Media.

http://www.paleycenter.org/2013-fall-pitch-competition

The winner receives $5,000 for their film as well as mentorship. While we are a long way from having a finished film to sell, it's a wonderful opportunity to bring the project before a group of filmmakers and industry experts, get early feedback, and build relationships.

So now the big question: what should we mention in our pitch?
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Ember

Ember

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2,115
The Truth At Any Price
Howard Bloom was publicist to some of the 1980's biggest music icons when he was struck down by M.E., an illness that left him bedridden for fifteen years. It was a long and difficult journey, but one that also brought him back to his first love: science.

Here he talks about how medicine treats what it does not understand.

Help make this film a reality. We are crowdfunding this documentary right now through November 22nd: http://j.mp/canarykickstarter
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Ember

Ember

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2,115
Canary in a Coal Mine
VOTE! Help Canary in a Coal Mine, a film about M.E., win indieWIRE's project of the week.

http://www.indiewire.com/article/vo...ek-will-it-be-fitness-act-or-leaves-or-canary

If we are chosen as project of the week, we win a consultation with distributor SnagFilms. We then advance to the next round: Project of the Month. If we are chosen as Project of the Month, we get to talk about our film with the head of documentary programming at the Tribeca Film Festival, which would be...kind of amazing.

How are projects chosen? Their audiences vote. With the energy of this audience, I think we've got more than a fighting chance!
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Ember

Ember

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2,115
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Andrew

Andrew

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Los Angeles, USA
Now they are pushing to get a slew of $1 backers to push the number of backers up. This is to break the record. If they do that, it means great publicity for the movie.

I'm not sure how this works, but apparently the original goal was just enough to get started, and then they were going to try to raise more later. But it went so well, it looks like they are going for full budget now, which is $200,000. I hope this works out for them. The preview is very impressive.
 
aimossy

aimossy

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1,106
pretty awesome! makes you wonder what could be raised for top notch research if our community gets bigger and we pour into it!
 
Ember

Ember

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2,115
With 10 days remaining, the countdown begins:

1,736 backers
$152,019 pledged
10 days to go

Today added less than $2,000--making the last climb to the goal look more difficult.
 
Ember

Ember

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2,115
Canary in a Coal Mine
about an hour ago
We are organizing a Thunderclap to energize the last week of our Kickstarter campaign, and we need your help!

You can read more and sign up here: http://j.mp/canarythunder

If you've never heard of Thunderclap, it is a tool that allows charities or causes to amplify a specific message by organizing hundreds of people to share that message with their social networks at a single, common moment.

Like Kickstarter, Thunderclap is all or nothing. We need at least 500 people to sign up to share our message on Twitter or Facebook before Tuesday, November 19th, at 1pm ET., or the message won't be sent.
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SickOfSickness

SickOfSickness

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2,566
Location
US
I wish they would have a higher number of backers. I like their promotion.

Get at least 10 friends to donate $1 each (through your link), and get a Behind the Scenes Pass.

You first give your email and name here http://j.mp/canary6509 and shows more information.

You get entered to win a filming too, and the one who refers the most gets invitations to all 3 events.
 
Ember

Ember

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2,115
Canary in a Coal Mine
I am taking over the TED Fellows Twitter account next week (https://twitter.com/TEDFellow) and I'd love to use it as a chance to highlight links to media (video, photo, text) not just about ME, but all the issues surrounding it.

It's followed by about 12,000 people passionate about TED.

Please post your suggestions here!

Think about what might appeal to a general audience and not require a lot of background knowledge to interpret. So for example, I will not be tweeting the ICC and I will probably not be tweeting any medical studies.

Some themes to consider:
- History of medicine
- Gender & medicine
- Politics of health & healthcare
- Insurance, disability, earning a living
- Psychiatry v. neurology, psychiatry v. science
- Forced institutionalization
- Famous or historical figures with ME
- The rise of chronic illness (esp. illnesses of immune dysregulation)
- Pathophysiology that might cut across diseases (e.g., altered microbiome, mitochondrial dysfunction, autonomic dysfunction)
- Anything nerdy (but written up in popular science) about the possible causes of ME: viruses and methods to detect them, environment illness, genetics, Epidemic of Absence
- Personal stories, blogs
- Art or music
- Favorite quotes from essays or books you have read – someone recently mentioned Susan Sontag and Virginia Woolf – that you think might apply to the story of ME

The list goes on...

So share your ME links, but do try to abstract from the specifics of our disease and think about the broader themes or analogies that might help the uninitiated better understand the situation this patient community finds itself it in.
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Ember

Ember

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2,115
Howard Bloom on what happens when we extend ourselves
Canary in a Coal Mine is a new documentary film about ME ("CFS"), and here's how you can help make it happen: http://j.mp/canarykickstarter

Howard Bloom on the variable nature of this illness and the consequences of using our limited energy.

Just by way of background, this was the last interview on the day when I had a major collapse (i.e., this photo: http://bit.ly/18wp9nO). He saw me coming undone before I did, and so the interview is full of moments when he speaks directly through the camera, to me, warning me of what will happen if I overdo it. I'm new. He has the experience of decades. It was incredibly loving and unfortunately, he was more right than I knew.
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Ember

Ember

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