TV and Movies Raise ALS Awareness —But They’re Only Part of the Story

ALS is sometimes introduced to the public through television and film. Viewers may recognize the disease from a dramatic storyline, a powerful performance, or a well-known character navigating life with ALS. These portrayals matter. They spark curiosity, empathy, and conversation.

But they are only part of the story.

Fictional portrayals can help audiences understand the emotional weight of an ALS diagnosis. They show the loss of independence, the strain on relationships, and the longing for answers that don’t yet exist. Yet even the most compelling on-screen stories cannot fully capture the day-to-day realities of living with ALS.

In real life, ALS affects far more people than many realize. It is estimated that 1 in 300 people in the United States will be diagnosed with ALS during their lifetime, most often between the ages of 55 and 75. While the average prognosis is two to five years, some individuals live much longer—continually adapting as their needs change. For many families, ALS becomes part of everyday life, reshaping routines, roles, and relationships.

This is where awareness must turn into action.

Amanda highlights how organizations like ALS Arizona help bridge the gap between awareness and real-world support. From caregiver education and respite care to adaptive recreation opportunities that create moments of joy, local support plays a critical role in improving quality of life for people living with ALS and the families who love them.

Yet awareness of these resources remains limited. A 2024 study by I AM ALS found that 90% of respondents could not name a single organization that supports people with ALS. That gap can delay access to help and leave families feeling isolated—often at the moment they need connection most.

“Greater ALS awareness means earlier diagnosis, stronger support, more research, and better quality of life for people living with ALS and their families,” shared Deboni Park, ALS Arizona’s Care Services and Advocacy Manager, in the article.

In Arizona, progress is being made. In May 2025, Governor Katie Hobbs officially recognized ALS Awareness Month, and ALS Arizona marked the occasion by sharing real stories from across the state—stories that may not feature movie stars or fictional heroes, but that reflect courage, resilience, and community in its truest form.

At ALS Arizona, we believe awareness is most powerful when it is paired with connection and care. Real stories help people see ALS not as a storyline, but as a lived experience—one that deserves understanding, support, and compassion.

Read the Full Article

Amanda Kehrberg’s original article was published in several Arizona news outlets, including the Paradise Valley Independent, Phoenix Independent, Scottsdale Independent, and Tempe Independent.

👉 Read the full article here:
https://www.yourvalley.net/stories/tv-movies-enhance-als-awareness-but-theyre-only-part-of-the-story,609567

We are grateful to Amanda for using her voice to elevate ALS awareness and help ensure that the stories of people living with ALS—and the communities that support them—are seen and heard.

➡️ Stay connected with ALS Arizona to learn more about ALS, explore resources, and support families across Arizona.