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The Disorder Channel Films

June 17, 2025
Storytelling Stage
Storytelling Stage (Booth #349)

One Shot to Live - Single-gene therapy may be the greatest hope for thousands of children with rare diseases. But the greatest challenge is time, or the lack of it. The parents of these children fight to save lives all while seeing through an entirely new lens that lets them live each day to the fullest. Batten disease and Surf1 Leigh Syndrome are featured. Directed by Brandon Carmichael.

Fighting the Rare - A touching and powerful glimpse into research on Lafora disease, a rare neurodegenerative condition, through the testimonies of researchers, patients and their relatives. Fighting the Rare is a documentary on the importance of biomedical research to find treatments for rare diseases. Sadly Angelina, whose story is at the heart of this film, passed on two weeks before this screening. Directed by Jordi Duran.

Up for Air - Meet Jerry Cahill, a 53-year-old pole-vaulter who continues to fight respiratory degeneration, depression and a potentially fatal double-lung transplant. Shot over a period of five years, Up for Air captures the fragility of life with Cystic Fibrosis and how dedicated athleticism, self-discipline, and community outreach can achieve unprecedented outcomes. Directed by Artem Agafonov.

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