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ALS Movies and Documentaries

Introduction to ALS

Understanding ALS

Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig’s disease, is a progressive, neurodegenerative disease that affects nerve cells in the brain and spinal cord. These nerve cells, or neurons, control the muscles that allow us to move our bodies. As ALS progresses, these neurons die, leading to muscle weakness and paralysis. This can result in difficulty speaking, swallowing, and breathing. At ALS United Greater Chicago, we’re committed to aiding those affected by this devastating disease, providing care and resources to individuals and their families.

Significance of ALS Awareness

Raising awareness about ALS is crucial. Increased public understanding can lead to greater funding for research, more effective policies, and improved care for those living with the disease. It also helps to dispel misconceptions and break down the stigma that can often surround illnesses like ALS. ALS United Greater Chicago is dedicated to amplifying the stories of those affected by ALS and fostering a community of understanding and support.

Role of Media in ALS Awareness

Media plays a significant role in raising ALS awareness. Films, documentaries, and public talks have the power to reach a wide audience, educating the public about the realities of living with ALS and the urgent need for a cure. Media can also influence public perception, helping to shape a more accurate and empathetic understanding of the disease. Examples include the global phenomenon of the ALS Ice Bucket Challenge, which dramatically increased awareness and funding for ALS research, and films like ‘The Theory of Everything’, which brought the story of physicist Stephen Hawking’s battle with the disease to a global audience.

Introduction to ALS Movies and Documentaries

Movies and documentaries offer powerful platforms to bring the realities of ALS into public consciousness. The stories captured on film often go beyond mere statistics, breathing life into the day-to-day experiences of individuals and families grappling with this condition. By accurately depicting the journey of those with ALS, filmmakers foster greater empathy and deepen our collective understanding of the disease’s multifaceted impact.

Such narratives serve not only as a source of invaluable insight but also as a catalyst for unity and action. Reflecting the indomitable spirit found within the ALS community, these films inspire viewers to engage with us in meaningful ways—be it by contributing time as a volunteer, providing financial support, or lending their voice to advocacy efforts. As we witness the profound strength and love showcased in these movies and documentaries, we’re reminded that each one of us can play a part in the broader mission to end ALS.

Through these poignant visual essays, the message of hope reverberates, echoing ALS United Greater Chicago’s belief in the power of informed and compassionate communities. Together, we stand ready to bolster the cause, uplift those affected, and tirelessly pursue a future free of ALS.

Famous ALS Movies

The Theory of Everything

‘The Theory of Everything’ is a biographical film about renowned physicist Stephen Hawking, who was diagnosed with ALS at the age of 21. The film depicts his extraordinary life, from his groundbreaking scientific work to his personal struggles and triumphs living with ALS. It offers a nuanced, empathetic portrayal of his journey with the disease, showing the physical and emotional challenges he faced while also highlighting his resilience and determination. The film has made a significant impact on public understanding of ALS, raising awareness about the disease and inspiring many to join the fight against it.

You’re Not You

‘You’re Not You’ is a poignant film about a woman named Kate who is diagnosed with ALS. The film follows her journey with the disease, highlighting the physical and emotional challenges she faces. It also explores the complex relationship between Kate and her unconventional caregiver, Bec, providing a nuanced portrayal of the patient-caregiver dynamic. The film serves to raise awareness about ALS and the impact it has on not only those diagnosed but also their loved ones and caregivers.


‘Hawking’ is a film that intricately weaves the story of Stephen Hawking’s outstanding contributions to science with the profound challenges he faced due to ALS. The movie digs deep into Hawking’s groundbreaking work in physics and cosmology, underlining how he reshaped our understanding of the universe even as ALS reshaped his physical abilities. Moreover, it provides an intimate exploration of his personal journey, allowing insights into the ways in which ALS influenced his relationships and professional milestones. The cinematic depiction of Hawking’s life serves not only as a biographical account but also as a means to elevate public consciousness about ALS, portraying the stark realities of the condition. Yet, it does so while celebrating the indomitable spirit and perseverance characterizing many individuals who confront life with ALS.

Noteworthy ALS Documentaries

So Much So Fast

‘So Much So Fast’ is a compelling documentary that follows the life of Stephen Heywood, who was diagnosed with ALS in his late 20s. The film chronicles his journey with the disease while also documenting his family’s relentless efforts to find a cure. It provides an intimate and humanizing portrayal of the disease, showing the physical and emotional challenges Stephen faced, as well as the resilience and determination of him and his family. ‘So Much So Fast’ has made a significant impact on ALS awareness and research, inspiring many to join the fight against the disease.

TransFatty Lives

‘TransFatty Lives’ is a remarkable documentary that presents the director and subject, Patrick O’Brien’s own journey with ALS, starting from his diagnosis at 30 years old. Through his lens, viewers gain access to a visceral, personal experience that illuminates the day-to-day challenges and triumphs of living with ALS. O’Brien confronts obstacles like depression with candor, but also shares his profound moments of joy, such as falling in love and embracing fatherhood. Not only is his story engaging and thought-provoking, but it also significantly enhances ALS awareness and understanding, allowing audiences to see beyond the disease and into the heart of a resilient individual battling it.


‘Gleason’ is a powerful documentary that follows the life of former NFL player Steve Gleason after his ALS diagnosis. The film chronicles his journey with the disease, from his initial diagnosis to his ongoing battle. It provides an intimate look at his life, showing his determination to live fully despite his diagnosis, and his commitment to raising awareness and funding for ALS research. The film has made a significant impact on public understanding of ALS, inspiring many to join the fight against the disease.

I Am Breathing

‘I Am Breathing’ is a moving documentary that tells the story of Neil Platt, who was diagnosed with familial ALS in his early 30s. The film offers an intimate look at the last months of Neil’s life, providing a personal and poignant portrayal of his experience with the disease. It also serves to raise awareness about familial ALS, highlighting the hereditary nature of the disease and the possibility of genetic inheritance.

Impact of ALS Movies and Documentaries

Raising Public Awareness about ALS

Films and documentaries have an undeniable impact on our understanding of complex issues such as ALS. By placing a human face on the struggles associated with this condition, these narratives foster empathy and insight. Beyond entertainment, these stories serve as important educational tools, deepening the collective consciousness about the disease. For instance, the phenomenon of the ALS Ice Bucket Challenge garnered international attention, significantly boosting funding for research and support. Moreover, movies like ‘The Theory of Everything’ and ‘You’re Not You’ contribute to the broader discourse, furthering public comprehension and engagement. Such media prompt viewers to participate in the broader ALS movement through donations, volunteering, and advocacy, bolstering the community’s efforts toward finding a cure.

Humanizing the Experience of ALS

Movies and documentaries about ALS not only raise awareness about the disease but also serve to humanize the experience of living with ALS. By offering an intimate portrayal of the challenges faced by those with the disease, these films help to foster a more empathetic understanding of ALS. They show that behind the statistics and medical terminology are real people with hopes, dreams, and families. They highlight the resilience and determination of those living with ALS, inspiring viewers and fostering a sense of community and solidarity.

Influencing Scientific Research and Funding

Movies and documentaries about ALS can also play a significant role in influencing scientific research and funding. By raising public awareness and understanding of the disease, these films can inspire viewers to donate to ALS research or advocate for policy changes that increase funding for research.

That’s A Wrap

The Importance of ALS Movies and Documentaries

ALS movies and documentaries play a vital role in educating the public, raising awareness, and inspiring action. By providing an intimate and humanizing portrayal of the disease, these films can foster a greater understanding of ALS and the challenges faced by those living with it. They can also inspire viewers to get involved in the fight against ALS, whether through donating, volunteering, or advocating for policy change. Moreover, by raising awareness and increasing public understanding, these films have the potential to influence the future of ALS research and treatment, driving progress toward finding a cure. We encourage everyone to watch and share these films to further our collective understanding and support for the ALS community.

As we continue to fight against ALS, the role of ALS-related media in raising awareness and influencing research becomes increasingly significant. Future movies and documentaries about ALS have the potential to reach even wider audiences, further increasing public understanding and support for the cause. Advances in technology, including the rise of streaming platforms and the increasing accessibility of filmmaking tools, can also enhance the reach and impact of these films. We look forward to seeing how these future developments in ALS-related media will continue to inspire action and drive progress towards finding a cure.

Raising awareness and supporting the ALS community is a collective effort that requires the involvement of us all. Whether it’s by watching and sharing ALS movies and documentaries, donating to ALS research, volunteering your time, or advocating for policy changes, every action counts. At ALS United Greater Chicago, we believe in the power of community and are deeply grateful for the support of our volunteers, advocates, and supporters. We encourage everyone to get involved and join us in our mission to end ALS once and for all. Stay up-to-date on ALS research, upcoming events, and how ALS United Greater Chicago is helping patients in your community. to support our cause and help us make a difference in the lives of those affected by ALS.

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