Canary in a Coal Mine at Good Pitch New York


Canary in a Coal Mine at Good Pitch New York

Dear friends, family and colleagues,

This Tuesday, Canary – a documentary film about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – was one of seven film teams to present at Good Pitch New York, a gathering of foundations, NGOs, campaigners, philanthropists, policymakers, brands, technology, government, and media to forge campaigns around films addressing leading social issues. Even though we had been preparing for four months, it’s one of those things you can’t quite understand until you live it. It was incredible!

Highlights: A grant from the Fledgling Fund for a virtual reality experience, a chance to meet a longtime mentor in person, and new support from the Harnisch Foundation and New York Women in Film and Television. (Actually, everything that happened was a highlight! So keep reading.)

After a 7 minute pitch, the table and the room embraced us with SO many offers of love and support to get this film and its stories out there. That smile was pretty much my face for a full 40 minutes.
 

First we showed our trailer and gave a four minute pitch. We honed our presentation over an intense two day workshop. The time limit really forces you to distill the story into its most essential elements and I came away from this with a much better sense of how to talk about my experience and this disease to a wide audience.

 

Everyone clapped in American Sign Language out of respect for my sound sensitivities. It was beautiful!

 

Our Good Pitch Table

Nancy Klimas from Nova Southeastern University powerfully framed this disease as a social justice issue. Linda Tannenbaum from the Open Medicine Foundation talked about the funding constraints the scientific community faces.

Tabitha Jackson from the Sundance Institute talked about how important it is for stories to be told by the people living them. Isaac Zablocki from Reelabilities had creative ideas for helping to make screenings accessible for home bound patients and across different disabilities.

We are starting a conversation with Shantha Rau Barriga of Human Rights Watch about forced institutionalization. Monica Mallampalli from the Society of Women’s Health Research had ideas for engaging new scientists around this disease and Brian Byrd from the New York State Health Foundation, ideas for reaching the medical profession and getting some of our content into New York hospitals.

Tom Rielly from TED committed to helping me leverage their amazing community for the film.

Lastly, AIDS activist Peter Staley offered his friendship and support and the wealth of his incredible experience. Yes, I have the biggest activist crush.

I finally got to meet my hero, AIDS activist Peter Staley, in person!!! What a lovely, humane, generous man. He offered his friendship through the long road ahead.
 

 

New funding and a virtual reality experience

And then there was the audience! So many amazing new connections and collaborations are emerging from this.

Diana Barrett of the Fledgling Fund announced a round of seed funding for our social impact campaign, specifically to help us create a virtual reality experience to give users (and in particular doctors) a visceral experience of what it is to have this illness.

We received new support from our co-producer, the Harnisch Foundation and a commitment of in-kind post-production support from New York Women in Film and Television. And help getting the word out and driving audiences to this film from the American Association of University Women and Goodwill.

And so many more conversations to follow!
 

This was without a doubt one of the best days of my life

 

Documentary film is in a golden age. The internet and access to multiple media and platforms mean that films can be a tool for movement building and bringing people together like never before. I felt that so strongly yesterday, for all of the films.

It was a particularly emotional moment for me because it was not long ago that I was alone in bed, sick, scared, unable to find any care, without a name for my experience, disconnected. And then I went online and found thousands of patients all around the world living my experience.

It is really them who have carried me this far and will carry the film into the world where I hope it will bring much needed change to medicine and offer hope and inspiration for people living with ME, all autoimmune conditions and other disabilities.
This is only the beginning. I cannot begin to express my gratitude to BRITDOC, Jess Search, Beadie Finzi, Sandi DuBowski and the entire Good Pitch team for their incredible vision and humanity.

I also want to thank the Sundance Institute and Chicken and Egg Pictures for their support and mentorship, Donna Fairman Wilson, Kevin Frick and Michelle Thies, and many generous anonymous donors.

Thank you to my tireless producers, Lindsey Dryden and Trish Gillespie, our executive producer Deborah Hoffmann, our editor, Emiliano Battista, and my husband, Omar Wasow, who makes everything possible. And to the table and the room for showing up and being so incredibly loving. I hope that everyone reading this can feel just a sliver of that love today.


Categories: All News, Featured news, United States

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4 comments on “Canary in a Coal Mine at Good Pitch New York
  1. Douglas H says:

    Excellent news, (smiling broadly since a few lines into the article 🙂 ), the VR sounds interesting and of course I am looking forward to the film, best of health to those involved. 🙂

  2. cort says:

    Big congrats to getting into this select crowd and making all those contacts and the opportunities they may bring!

  3. Lara Strong says:

    This is the best news I’ve heard in a while! Thank you so much Jen and everyone who has worked tirelessly on this film and the surrounding campaign. I may have started to cry when I saw the picture of everyone clapping in sign language, how lovely for an entire audience to be so considerate and welcoming to someone with ME.
    Thank you so much and well done!

  4. Nancy Henson says:

    I am so excited about this documentary and hope to see it on TV and in theaters. I’m 75 and have had ME for over 30 years. Although I have the moderate form, it totally ruined the life I had planned for my career and retirement. I was lucky to earn pensions since I was 44 when I got sick. Regardless, with a husband battling bipolar and spending anything we managed to save, there was little left for our “golden years.” I lost him 3 years ago and live alone in a senior setting fighting depression as I’m an hour away from family and friends. I can no longer drive long distances. But I continue as the editor of a local ME/CFS/FM support group newsletter and will continue as long as my fingers work. I told my story above to show that even moderate ME can ruin your life.

    But we must, must, must make some headway now for those severely affected and are bedbound, housebound, etc. Life may not be fair but it definitely downright despicable for people with severe ME. I’m sure this wonderful film will help to do that in a large way. I hope people will donate whether big or small – I’m sure every dollar counts. I read this article thanks to #ME Action and was overjoyed!

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