In February of 2024, Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, on how to tell your rare disease story in video. We were so pleased with all the excellent short documentaries that resulted from this session. Three of the films will be screening at our RARE Advocacy Summit in Kansas City this September. Here’s a look at a film on Paula Lindsey’s life with Scleroderma, Crohns Disease and Breast Cancer. We were thrilled that Paula returned to our program to make this (her second film) follow-up to “Black Butterflies,” which screened at the Global Genes Health Equity Forum in 2022.
A scene from the rare disease film “Metamorphosis Mine”.
“Paula reached out to me because she saw that I had a talent for editing videos on social media for my entertainment business and when we met she told me how inspired and uplifted she felt watching my journey overcoming my own health and mental issues. I had no idea by doing this film that I would learn so much about these rare diseases and be even more inspired to keep pushing forward, and to continue searching for silver Linings no matter what. After all, if this survivor of Scleroderma, Breast Cancer, Crohns Disease and so much more can do it… then why can’t I? It was an emotional experience, not just filming but editing too. I didn’t truly understand what my friend was going through until we did this project together. It made me realize I need to take more time to get to know the people I love so I can appreciate who they are and what they have overcome! The workshop really gave me a good perspective on how to layout the film as far as the background, interview, and finishing messages. What I wanted to do all made sense after I watched the workshop. Thank you all for that!”
– Brooke Hepburn
Watch this film below:
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