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Boing Boing presents: Skeleton Boy, a moving short documentary about the life, death and afterlife of Harry Eastlack, star of the Mutter Museum

mercredi 5 juin 2019, 21:09 , par BoingBoing
Philadelphia's Mutter Museum (previously) is one of my favorite museums in the world: built from the private collection of pathologist Dr Thomas Dent (who aggregated the collections of many other pathologists), it is a solemn and moving place to see the incredible breadth of human physiognomy and pathology.

One of the star exhibits at the Mutter is the skeleton of Harry Eastlack, who lived and died with the rare genetic disease fibrodysplasia ossificans progressiva (FOP), which causes the slow, relentless growth of a second skeleton within your body.

We're proud to help release the short documentary 'Skeleton Boy,' which tells the story of Eastlack and Dr Frederick Kaplan, the FOP researcher who discovered the gene implicated in FOP, as well as Carol Orzel, a fellow FOP sufferer who was so inspired by Eastlack's story that she donated her skeleton to the Mutter.

Skeleton Boy is part of 'The Face Phantom: Tales Inspired by the Mütter Museum, from Metabook.

Here's a word on the video from its director, Benjamin Alfonsi: 'I wanted to make a short documentary about Harry Eastlack as a tribute and also to bring attention to the disease from which he suffered, FOP. When I learned that the remains of another FOP sufferer, Carol Orzel, would be displayed alongside Harry's, I knew I had to update the film to include her. I found their stories moving and strangely inspiring, and I hope others do too.'
https://boingboing.net/2019/06/05/fibrodysplasia-ossificans-prog.html
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