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Updated: Sep 21

Nothing like the ALS Ice Bucket Challenge in 2014 has brought the disease to the forefront. ALS remains an orphan disease with only thousands dying each year around the world, compared to other diseases garnering more deaths annually.

Still, those who have lived with ALS have stories to tell. Stories about their accomplishments, who they have loved (and who has loved them), who they are, and the potential they’ve lost.

Novelists and screenwriters alike have produced some entertaining films and books. Will you watch a film under the stars or read a novel on the beach?

Take your pick and share your thoughts.

Tuesdays with Morrie (1997) – novel by Mitch Albom

Tuesdays with Morrie is a memoir by American author Mitch Albom about a series of visits Albom made to his former sociology professor Morrie Schwartz. Morrie has ALS but the main focus of the novel is what you can learn from when facing death. Uplifting and sweet, totally re-readable!


You’re Not You (2014) – film directed by George C. Wolfe

Based on a novel of the same name, Hilary Swank plays a pianist who is diagnosed with ALS and strikes up an unlikely friendship with her college-age caregiver (Emmy Rossum).




The Theory of Everything (2014) – film directed by James Marsh

Stephen Hawking’s life’s work is the focus of this film, with his ALS diagnosis playing a supporting role. Set at the University of Cambridge, it details the life of the theoretical physicist Stephen Hawking. The film garnered an Academy Award nomination and actor Eddie Redmayne won an Oscar for his portrayal of Stephen Hawking.



Gleason (2016) – documentary directed by Steve Gleason

Gleason is an American documentary that follows Steve Gleason, former New Orleans Saints football player, as he lives with ALS. Gleason premiered at Sundance and ALS Double Play screened it in 2017 at their Purple Carpet Event.

Every Note Played (2018) – novel by Lisa Genova

An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. That was eight months ago. Richard now has ALS, and his entire right arm is paralyzed.


Blackbird (2019) – film directed by Roger Michell

Blackbird is a 2019 American drama film directed by Roger Michell, from a screenplay by Christian Torpe. It is a remake of the Danish film Silent Heart. Blackbird, which premiered at the Toronto International Film Festival in 2019, beautifully portrays a woman who gathers her family together for a final weekend. The film stars Susan Sarandon and Kate Winslet and is set in a gorgeous beach house. While ALS is not specifically mentioned, it is alluded to. The focus surrounds the family and its relationships as they deal with the difficulty of their mother’s decision.


Here's an extra little vid - Kate Winslet on family and loss.

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