SUMMARY

Some 30,000 Americans have been diagnosed with ALS, the rare neurodegenerative condition also known as Lou Gehrig's Disease. As researchers work for a cure, one patient is raising millions for the cause while he reckons with his own mortality. The story is part of NewsHour's series, Disability Reframed, with Judy Woodruff. More lessons from the series can be found here.

For a transcript of this story, click here.

News wrap alternative: Check out recent segments from the NewsHour, and choose the story you’re most interested in watching. You can make a Google doc copy of discussion questions that work for any of the stories here.

Key terms

neurodegenerative — nerve cells in the brain lose function over time and ultimately die

Amyotrophic lateral sclerosis (ALS) — formerly known as Lou Gehrig's disease; a neurological disorder that affects motor neurons, or nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing

WARM UP QUESTIONS

1. Who is Dan Doctoroff?
2. What neurodegenerative disease was Doctoroff diagnosed with in 2021?
3. When did Doctoroff start the nonprofit organization Target ALS?
4. Why is there optimism around Doctoroff's organization?
5. Where is cutting-edge research on ALS being conducted?

FOCUS QUESTIONS

What is the mission of Target ALS?

Media literacy: Where can students find out more about under-acknowledged diseases such as ALS? What do you think might be the unintended result when the news media does not report on diseases like ALS as much as other diseases that affect more people?

Alternative: See, Think, Wonder: What did you notice? What did the story make you think? What story would you want to find out more about? Where would you go to learn more?

FOR MORE

What students can do:

• Watch this video and answer the following question — What does it mean to defy something like a devastating disease and other challenges in life that may seem overwhelming?

• While there is less news of brain diseases like ALS in the news than other illnesses, advocates for the disease have successfully garnered attention in different ways, including theIce Bucket Challenge in 2014. The fundraiser saw celebrities and lawmakers, members of the public and NewsHour's own anchors Gwen Ifill and Judy Woodruff participating. Ask a family member or neighbor if they remember hearing about the Ice Bucket Challenge and perhaps share with them the video and work you did on this lesson.

Click here: https://www.youtube.com/watch?v=Z_l9jnrY1EA

• If you are interested in learning more about neurodegenerative disorders that share some commonalities with ALS, consider researching a group of diseases called atypical parkinsonisms, which include the following diseases:
  • Dementia with Lewy Bodies (DLB)
  • Progressive supranuclear palsy (PSP)
  • Multiple system atrophy (MSA)
  • Corticobasal Syndrome (CBS)

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