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Consider This from NPR

One Couple's Fight to Cure ALS

Consider This from NPR

NPR

News, Daily News, News Commentary, Society & Culture

4.26.2K Ratings

🗓️ 13 July 2023

⏱️ 15 minutes

🧾️ Download transcript

Summary

Six years ago when former Obama staffer Brian Wallach was diagnosed with Amyotrophic Lateral Sclerosis - ALS - a rare neurological disease that kills most people who contract it within a few years, he and his wife Sandra Abrevaya quickly got to work. They launched a non-profit advocacy group I am ALS and a battle to try and fight for increased funding and research that they hoped would lead to a cure for the disease.

Since then Wallach and Abrevaya have changed the face of medical advocacy in the country, helping secure legislation that President Biden signed in 2021 that funds $100 million worth of ALS initiatives each year.

NPR's Juana Summers spent time with Wallach and Abrevaya to hear about their fight for a cure for ALS.

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Transcript

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0:00.0

Today, I consider myself the luckiest man on the face of the earth.

0:18.3

That I might have been given a bad break, but I've got an awful lot to live for.

0:26.1

Thank you.

0:28.1

It's been 84 years since Yankee legend Luke Eric delivered his famous farewell speech

0:33.2

to a sold-out Yankee stadium after having been diagnosed with a disease that would become

0:38.5

synonymous with his name, Amiatrophic Laterals Chlerosis, or ALS.

0:44.7

The disease attacks nerve cells in the brain and spinal cord.

0:48.4

It takes away a person's ability to talk, walk, and ultimately breathe.

0:53.8

There is still no cure for ALS.

0:56.6

And treatments for the disease have been slow to develop,

0:59.6

though an experimental drug recently approved by the FDA may slow down the disease

1:04.5

and extend patients' lives.

1:06.6

In 2021, President Biden signed legislation known as Act for ALS.

1:12.6

This bill really matters.

1:15.2

You know, y'all know, ALS robs patients and families of so much.

1:18.9

The immense physical, emotional, and financial toll.

1:22.9

Act for ALS expands federal funding for ALS treatment and gives patients quicker access

1:28.5

to treatments still under FDA review.

1:31.9

When he signed the bill into law, Biden called the legislation,

1:35.2

the result of Democrats and Republicans reaching across the aisle,

1:39.6

and the advocacy of patients.

1:41.8

Patients like Brian Wallach and his wife, Sondra.

...

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