Life With ALS

Published March 20, 2018 at 11:00 AM EDT

In this Sept. 18, 2017, photo, Pete Frates, who is stricken with amyotrophic lateral sclerosis, or ALS, and is the inspiration of the Ice Bucket Challenge, , is kissed by his mother Nancy while appearing with his wife Julie and daughter Lucy at Fenway Park in Boston. Frates, whose challenge raised millions of dollars for research on Lou Gehrig's disease, is recovering from a health scare that landed him in the hospital. (AP Photo/Charles Krupa)

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.

This show airs Tuesday at 11 a.m. EST.

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