Thursday, November 14, 2013

@TEDFellow Takeover

@jenbrea is taking over the TED Fellows Twitter account next week ( It's followed by about 12,000 people passionate about TED. 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 and the concepts and trends that cut across communities.

Please post your suggestions here!

- The rise of chronic illness (esp. illnesses of immune dysregulation)
- The Quantified Self
- Personalized medicine
- Participatory medicine
- Pathophysiology that might cut across diseases (e.g., altered microbiome, mitochondrial dysfunction, autonomic dysfunction)

Some themes to consider:
- History of medicine
- Gender & medicine
- Politics of health & healthcare
- Insurance, disability, earning a living
- Psychiatry v. neurology
- Medicine v. science- Forced psychiatric institutionalization (historic and contemporary)
- Famous or historical figures with ME
- 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...

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.

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.

Join our Thunderclap


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:
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.

Wednesday, November 6, 2013

Canary is a Paley DocPitch Finalist!

We are 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'll get a chance to pitch our film to a committee of executives from USA, A&E, MTV, History, PBS (POV), and an audience of professionals in film and television, gathered at The Paley Center for Media.
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 for the big question: what should we mention in our pitch?
Jen & Kiran

New trailer and more than halfway there!

Dear Backers,
Thank you, everyone, for all of the energy and momentum you have given this film. We have been so moved by your emails, messages, and comments. With your help, in just ten days, we have raised over $100,000 for the production of Canary in a Coal Mine.
We could not have done it without you. All the watching, giving, spreading and sharing of made this possible. We are deeply touched by your generosity, your enthusiasm and the trust you have put in us!
We have 18 more days to reach our $200,000 goal. Over the next two weeks we'll be releasing short video clips, all about a minute or so in length. The first is an 80-second trailer and we'd like to show it to you, first:

If it touches you, please share it with a handful of friends and loved ones. Every new viewer helps to elevate us from “invisibility” and every new donor (even $1!) helps us get closer to producing the full film. With your help, the Kickstarter campaign itself can be a vehicle for raising awareness about ME.
With love and gratitude,
Jen & Kiran

Thursday, October 31, 2013

ABC News: Felled by 'Devastating Disease Doctors Have Never Heard of'

We are thrilled to announce that has a new piece about Canary in a Coal Mine and the realities of life with Myalgic Encephalomyelitis. It features interviews with Jennifer Brea, Nancy Klimas, and Jessica Taylor.
At the heart of this project is a belief in the unique power of film and media to bring to light the stories of people with otherwise invisible illnesses. This is one of the rare times that Myalgic Encephalomyelitis has been portrayed in American media with that name and with an unblinking focus on how severe this disease can be for many.
Please consider sharing, tweeting, liking, and commenting on the story. We need to let ABC and the world know there's demand for stories like this.

As Dr. Klimas says in the piece: “What's fascinating about the film is the most difficult thing to get across to the medical community is how serious this disease is.”

Together, we can make that change in the world. With your support and generosity, we have raised over $90,000 and are within striking distance of raising $100,000 by tomorrow (Friday)—just ten days after the launch of our campaign.

Thank you again for bringing us so far, so fast!

With love and gratitude,

Jen & Kiran

Wednesday, October 30, 2013

Technology enables disability filmmaking

Many have asked: how can you make a film about M.E. if you are really that sick? Technology helps a lot. With the use of a few common technologies (and the support of an able-bodied crew!) I can direct and interview, even when I am bedridden.

What this video does not explain is that we've been shooting an average of one day a month since February. We can shoot much more if I work from home, but shooting myself, or traveling to New York to shoot others is an intense demand on limited reserves. It usually takes two to three weeks to recover. Pacing in all things.

Making this film has already been life-changing in terms of my perspective on my disability. I am still working hard on getting WELL. But even if that never happens, what this has shown me is that I can still live a full and meaningful, if different, life with an ounce of realism, some modifications, and the gift of the people who love and have stuck by me.

And the north star of a big f'ing dream.

#seeME #mecfs

Saturday, October 26, 2013

WE DID IT!! (In 3 days + 5 hours). Now, help us make history.

WE DID IT!! In just 3 days and 5 hours, we have zoomed past our first Kickstarter goal, raising more than $50,000 for Canary in a Coal Mine. You have absolutely knocked us over with all of your love and support (in Jen's case, literally).
When the news came in, we got a little emotional:

Words cannot equal our gratitude for your generosity. This campaign has invigorated a community that has for so long felt its voices marginalized and ignored. The power and the energy behind this campaign is extraordinary. This is our moment. We are going to do everything we can to tell this message from bigger and bigger platforms, and to make a film that is worthy of the trust you have put in us and the love you have showed. You have inspired us to push harder, to dream bigger.

OUR GOAL: $200,000 and 6509 backers by November 22nd

We will explain more about this on Monday, but here's our big crazy vision: to raise our *entire* film budget with this campaign, and to be the documentary film with the greatest number of backers in the history of Kickstarter. It only takes $1 to write a new story and change the future.
Why 6509 backers? Because we want to win with overwhelming force. That number would put us one man or one woman ahead of the standing record. Whether we're pitching to journalists or courting distributors, we want incontrovertible proof that yes, we exist, we are numerous, and so are the people who love us. There is a passionate audience that wants to see this story told.
How do we get there? Share, share, SHARE.
Much love and more soon,
Jen & Kiran
#seeME #MEally