OUR CURSE (pl. NASZA KLĄTWA) (directed by Tomasz Śliwinski, Poland 2013, 27 minutes) Our Curse was nominated for the Academy Award for Best Documentary (Short Subject) at the 87th Academy Awards. The film is a personal statement of the director and his wife, who have to deal with a very rare and incurable disease of their newborn child – the Ondine’s Curse (also known as CCHS, congenital central hypoventilation syndrome). People affected with this disease stop breathing during sleep and require a lifetime mechanical ventilation on a ventilator. The film shows the process of taming fear associated with the disease.
CUERDAS (directed by Pedro Solís García, Spain 2014, 10 minutes) "Cuerdas" 2014 winner of the the Goya ® award for Best Spanish animated short film. The film describes a tender story of friendship between two special children.
IMAGINE (directed by Carl Mason, USA 2015, 10 minutes) "IMAGINE" follows the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C; an extremely rare, incurable disease which causes neurological decline and dementia.
Menkes Disease: Finding Help and Hope
MENKES DISEASE: FINDING HELP AND HOPE (directed by Daniel DeFabio, USA 2015, 12 minutes) Academy Award nominated actress Mary McDonnell narrates this look at a rare fatal genetic disorder called Menkes Disease. It prevents boys from metabolizing copper. Boys who get treatment in the first ten days of life can have long and relatively normally lives. If the disease is not detected and treated that early their lives are much shorter and far from normal. This short documentary aims to explain some of the basics of the disease and treatment but also provide context with examples from three families across the globe showing that there is life after this terrible diagnosis. And that life is more joyful and hopeful than you might expect.
Tess Is Not Alone: A USP7 Story
TESS IS NOT ALONE: A USP7 STORY (directed by Bo Bigelow, USA 2017, 8 minutes) When the parents of 7-year-old Tess Bigelow learned of her ultra-rare genetic disorder, they believed she was the only one of her kind. This short documentary tells the story of their worldwide quest to find others like Tess.
Up For Air
UP FOR AIR (directed by Artem Agafanov, USA 2016, 1 hr 3 min) "Up For Air" explores the human spirit's fight for survival through the eyes of 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 a chronic, fatal illness as it disrupts physical, mental, interpersonal and professional well-being, and how the intersection of dedicated athleticism, self discipline, and community outreach can achieve unprecedented outcomes.
SPECIAL BLOOD (directed by Natalie Metzger, USA 2016, 1 hr) Failed by a healthcare system that is largely ignorant of their existence, four patients with a life-threatening, rare disease learn to find strength in each other and their small, but strong community.