ALS Through Books & Film: Stories of Strength, Love, and Resilience

Nothing since the ALS Ice Bucket Challenge in 2014 has brought the disease to the forefront in quite the same way. ALS remains an orphan disease, with thousands dying each year worldwide—far fewer than many other diseases that receive greater attention.

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

Novelists and filmmakers alike have brought these stories to life. Will you watch a film under the stars or read a novel on the beach? Take your pick and share your thoughts!

Films & Documentaries

My Son, Christopher (2016) – ALS Double Play⭐ A Must-Watch: Our Own Story ⭐This short, deeply personal film tells the story of our first president and inspiration, Christopher, and the impact of ALS on his family and friends. My Son, Christopher is more than a film—it’s a tribute to the strength and love that ALS Double Play was built on. Available now on our website, we encourage everyone to watch and share this heartfelt story. You’re Not You (2014) – George C. Wolfe Hilary Swank stars as a pianist diagnosed with ALS who forms an unlikely friendship with her college-age caregiver (Emmy Rossum).

The Theory of Everything (2014) – James Marsh A biographical film about renowned physicist Stephen Hawking, whose ALS diagnosis was just one part of his extraordinary life’s journey. Eddie Redmayne won an Academy Award for his portrayal of Hawking.

Gleason (2016) – Steve Gleason This documentary follows former New Orleans Saints football player Steve Gleason as he lives with ALS. It captures his resilience, advocacy, and personal moments, making it a deeply moving watch.

Blackbird (2019) – Roger Michell A remake of the Danish film Silent Heart, Blackbird stars Susan Sarandon and Kate Winslet in a drama about a woman with an unnamed terminal illness (strongly resembling ALS) who gathers her family for a final weekend together.

LUKi & the Lights (2023) An innovative short film designed to support families, caregivers, and children of those living with ALS. Presented without dialogue, it relies on sound and visuals to tell a touching and accessible story.

For Love & Life: No Ordinary Campaign (2024) This documentary tells the inspiring story of Brian Wallach and his wife, Sandra Abrevaya, as they navigate Brian’s ALS diagnosis and turn their fight into a national advocacy movement with the creation of I AM ALS.

Books

Tuesdays with Morrie (1997) – Mitch AlbomA memoir about the author's visits with his former sociology professor, Morrie Schwartz, who had ALS. The book focuses on the wisdom that comes with facing death, offering an uplifting and heartfelt read.

Every Note Played (2018) – Lisa GenovaAn accomplished concert pianist, Richard, was once celebrated for his talent, but ALS changes everything. As his body fails, he must rely on his ex-wife for care, leading to an emotional story about forgiveness and love.

Personal Stories: Sarah Langs

photo credit: MLB

Sarah Langs, a respected baseball analyst, was diagnosed with ALS in her late 20s. Despite the diagnosis, she continues to work, write, and advocate for ALS awareness. She launched the #FistBumps4ALS campaign, using her platform to push for research funding and to bring more attention to the fight against ALS.

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These books, films, and stories offer glimpses into the realities of ALS—its challenges, triumphs, and the resilience of those who live with it. Which one will you explore next?