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ALS Worldwide
February 06, 2017

It’s Not Yet Dark

"It's Not Yet Dark" is a heartfelt and stirring documentary about the extraordinary love for life of Simon Fitzmaurice, stricken with a devastating ALS/MND diagnosis but determined to never give in.

The film was directed by Frankie Fenton and narrated by Colin Farrell (speaking the subject’s prose). The documentary's success may also help boost the fortunes of Fitzmaurice’s film, “My Name Is Emily,” whose world progress continues with a U.S. theatrical opening later this month.

Never losing a fighting-Irish spirit, nor his robust sense of humor, Fitzmaurice is buoyed and fortified by his loving wife and their kids (now six), as well as his parents, siblings and friends. It's a story of uncommon emotional fortitude, as he never wallows in self-pity. After all, he has much to live for: his family, his writing and his dream of filmmaking.

Even when confined to a wheelchair with his body kept alive by an array of tubes, Fitzmaurice cannot move, but he still communicates, writes and makes jokes. He expresses himself with the help of a remarkable computer program; instead of finger tapping on a keyboard, his eye-gaze stimulates the keys.

Immobile and dependent totally on others to maintain his daily physical functions, Fitzmaurice perseveres. He works on a novel, gestated as good-bye letters to each of his children, and continues writing a screenplay. Through his grueling daily regimen and continually declining health, he never wavers from his ultimate dream: to direct films.

Asking himself what is "the best part of living with ALS/MND,” he says, simply, “It’s the ‘living’ part.” Fitzmaurice scoffed at doctors’ offers to “pull the plug” as his physical life narrowed to a degree that would be unbearable to many others.

“I love being alive,” he insists.

The film recently premiered at the prestigious Sundance Film Festival and received a standing ovation. We will inform you, our online community, when the documentary will be made more widely available to view.

To read the full article and watch a short trailer, please visit

ALS Worldwide thanks Simon Fitzmaurice, his family, and the makers of the film for sharing this authentic and inspiring story with all of us.