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      Dagmar Munn
      Keymaster

      This is a commentary on Amazon’s “Solos” – – you can read the full column here: ALS Recognition Is Growing in Hollywood.

      Outside of the ALS community, ALS is not that well-known. It’s hardly ever mentioned in the mainstream news unless a celebrity happens to die from it. And the lack of public awareness of ALS is a topic of constant debate among patients.

      That’s why I was jolted into attention the other night when I realized ALS was a plot point in the TV show I was watching called “Solos.“ It happened in the first episode, titled “Leah,” of the newly released series streaming on Amazon Prime Video.

      In this episode, Anne Hathaway plays the role of a scientist in the year 2024 who is attempting time travel. Her mother has ALS, and Hathaway’s character wants to jump forward in time to bring back a cure. But she knows that time travel has its own consequences, which is a risk she’s willing to take. I won’t spoil the ending for you, but I encourage you to watch it and the other thought-provoking episodes in this series.

      To me, having ALS serve as a plot point is a welcome sign of recognition — something I wrote about in my column “Let’s Go to the Movies.”

      It tells me that perhaps the writers and directors had family or friends affected by ALS. They know there’s no cure, and for most patients, the prognosis is short. They may have heard of Stephen Hillenburg, creator of SpongeBob SquarePants, who lived only one year with ALS and died in 2018. Or, Nanci Ryder, a celebrity publicist, and Mari Winsor, known as the Pilates guru and trainer to stars, both died of ALS last year.

      Have you watched “Solos” and what did you think of it? Do you feel how ALS was represented will help or hurt awareness advocacy? Are Hollywood and other media groups doing well to include ALS and other rare diseases in their productions? Can they do more?

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