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Sandra Abrevaya listens carefully as her husband Brian Wallach speaks so that she can translate his words during an interview at their home in Kenilworth, Illinois, on June 15, 2023. As a result of his ALS diagnosis in 2017, Wallach's functions have diminished, and though he can still use his voice, his wife Sandra must translate his words for others. Jamie Kelter Davis for NPR Jamie Kelter Davis/Jamie Kelter Davis for NPR hide caption

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Jamie Kelter Davis/Jamie Kelter Davis for NPR

Sandra Abrevaya listens carefully as her husband Brian Wallach speaks so that she can translate his words during an interview at their home in Kenilworth, Illinois, on June 15, 2023. As a result of his ALS diagnosis in 2017, Wallach's functions have diminished, and though he can still use his voice, his wife Sandra must translate his words for others. Jamie Kelter Davis for NPR

Jamie Kelter Davis/Jamie Kelter Davis for NPR

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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This episode was produced by Elena Burnett and Marc Rivers. It was edited by Courtney Dorning and Jeanette Woods. Our executive producer is Sami Yenigun.

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