Happy holidays fellow Citizen Scientists! I’m Ipek Ensari, an Associate Research Scientist working with Dr. Elhadad and the rest of our team at Citizen Endo. This year has been strange and challenging for many, but we have some exciting news to share with you to end 2020 on a high note. Consider this a “save-the-date”!
Back in October, I was selected to participate at the Symbiosis Film Competition held during the 13th Annual Imagine Science Film Festival. Symbiosis selects 6 scientists and 6 filmmakers and pairs them to make a science-inspired short film in 8 days from start to finish, from conceptualization to completion. I was paired with Camille Hollett-French, a Vancouver-based filmmaker, who coincidentally enough was diagnosed with endometriosis in 2016. We both had a desire to make a film that expresses our frustrations about endometriosis from multiple perspectives.
The end product is ENDOMIC, a documentary through the lens of satire about modern medicine’s and society’s take on endometriosis. Using a “mockumentary” format, the film weaves in real patient experiences in parallel with a narrative exploration of its history in the scientific literature, disparities in diagnosis and treatment, and lack of research funding, to raise awareness and help sense-making for patients.
ENDOMIC is unique in several aspects. First, we crafted its satirical story-telling using content from published peer-reviewed research and real patient experiences (even though some of them sound fictional at times!). Next, it features one of our team’s latest publications which reports findings from Phendo demonstrating how mobile health technology and direct patient input can be used to improve our understanding of endometriosis. The film also discusses inclusive medicine and healthcare, a first in this realm, and about a third of the production and acting crew include members with endometriosis in real life.
Much to our excitement, ENDOMIC will be having its world premiere at the Slamdance Film Festival, which runs February 12–25th. The film will screen in the festival’s first ever Unstoppable program for films by filmmakers with visible and non-visible disabilities. If you are interested, the festival gives free passes until December 31st 2020, which you can get here.
We are currently waiting to hear back from other festivals, and we are eager to share endometriosis stories with wider audiences around the world in the coming months. Our goal with this film is to raise public awareness about the lack of visibility and research, treatment gaps, and the disconnect between the patient’s experience versus others’ (e.g., providers, family, friends) perception of endometriosis.
We could not have done this all without you, so we will be hosting a private screening on January 14th just for our Citizen Endo community! This virtual event will also include a moderated discussion panel with Q&A afterwards. If you are interested in partaking in this special sneak peek before the rest of the world, please RSVP here and keep an eye on your inbox for updates! We will follow up with invitations for the event link. We hope you can join us and look forward to seeing you on the 14th!
ENDOMIC has an Instagram account @abloodycrisis, which you can follow for updates and share using the hashtag #ENDOMIC.
We are incredibly grateful to you for being a part of our community, participating in our research, and helping us gain insights on and increase public awareness to endometriosis. Have a wonderful holiday season and a happy new year!
To contribute to endometriosis research, you can download the Phendo app and track your symptoms. Tracking in Phendo may also help you understand your experience of the disease and communicate with your doctor.
Download Phendo for iOS here.
Download Phendo for Android here.
For more information about our research and Phendo visit www.citizenendo.org/phendo.
Have any questions? Email us at email@example.com