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Life With ALS

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Pete Frates is kissed by his mother, Nancy, while appearing with his wife, Julie, and daughter, Lucy, at Fenway Park in Boston. (Charles Krupa/AP)
Pete Frates is kissed by his mother, Nancy, while appearing with his wife, Julie, and daughter, Lucy, at Fenway Park in Boston. (Charles Krupa/AP)

With Kimberly Atkins

Neuroscientist turned novelist Lisa Genova’s first book “Still Alice” was a bestseller and a movie. Her new book, "Every Note Played," is about ALS. We're reading through it. We're also talking with Nancy Frates, the mother of Ice Bucket Challenge pioneer Peter Frates, and a doctor who treats ALS patients.

Guests: 

Lisa Genova, neuroscientist and best-selling author of "Still Alice" and "Left Neglected." Her new book about ALS is "Every Note Played," (@LisaGenova)

Nancy Frates, mother of ALS Ice Bucket pioneer, Peter Frates, (@momfrates)

Mark Ross, neurologist who treats ALS patients at the Mayo Clinic in Arizona.

From The Reading List:

Excerpt of 'Every Note Played'

Sometimes it’s easier to tell truth in fiction. Lisa Genova has made a career of it. The neuroscientist turned novelist’s first novel “Still Alice” looked at the struggles of Alzheimer’s. This time, she turns her pen to ALS. She tells the tale of a piano virtuoso whose body begins to slowly weaken and fail due to the devastating disease. And she tells it with heart and hope.

This hour, On Point: The story and real life struggles of ALS.

--Kimberly Atkins

This program aired on March 20, 2018.

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