“It’s Not Yet Dark” Follows Irish Filmmaker with ALS, the Disease That Claimed Sam Shepard This Week


From Lou Gehrig to Stephen Hawking to the Ice Bucket Challenge to Frankie Fenton’s new documentary It’s Not Yet Dark, ALS — amyotrophic lateral sclerosis, also known as motor neuron disease (MND) — has been in the public eye for as long as many of us can remember. Still, its origins and consequences remain a mystery, puzzling scientists to this day.

What we can deduce with immediate results is the experience of living with ALS. From diagnosis to the struggles of creating a new normal, thousands of people across the globe are learning to do what the It’s Not Yet Dark subjects, Irish filmmaker Simon Fitzmaurice and his wife Ruth, have done: first, cope; next, take something back.

ALS is what doctors have named the death of neurons that control voluntary muscle movement, meaning those affected slowly lose control over movement, including speaking, swallowing and breathing. Despite the oncoming debilitations, Fitzmaurice, a promising young filmmaker diagnosed while on the cusp of international success, is determined to write and direct another film. It’s Not Yet Dark follows this journey, and its result: My Name is Emily, starring Harry Potter’s Evanna Lynch and legendary Irish actor Michael Smiley.

This week, we mourn the loss of Sam Shepard, an iconic actor and Pulitzer Prize®-winning writer, who succumbed to ALS on July 27, 2017. He was 73.

But at the same time, we celebrate life with the release of It’s Not Yet Dark, a film that educates about the disease, normalizes those living with it and gives hope to its survivors. You won’t believe what this determined artist is able to accomplish with fascinating new technology, a supportive family and a whole lot of passion.

Narrated by Academy Award®-nominated actor Colin Farrell.

It’s Not Yet Dark opens in select US theaters this Friday, August 4, and will be available on demand.
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