Leah Stavenhagen—dancer, traveler, author, advocate—died February 19, 2026.

She was 33.

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Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s Disease, is a rare, terminal neurodegenerative disease.

Progressive motor neuron loss causes gradual muscle stiffness, twitches, weakness, and wasting, continuing until the ability to eat, speak, move, breathe without mechanical support is lost.

While ALS occurs more commonly in men and older people—and is stereotyped as an older white man’s disease—it does not discriminate on the basis of age, gender or race. There is no definitive diagnostic test, most often no known cause, and no known cure.

The treatment goal for ALS is to slow disease progression and improve symptoms.

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In 2019, nearly a year after the appearance of her symptoms, Stavenhagen was diagnosed with ALS.

In 2021, she started Her ALS Story (HAS)to raise awareness of ALS among young women and to build a community.

In November 2025, an article about young women with ALS appeared in The New York Times.

In February 2026, it was Stavenhagen’s obituary that appeared.

The ALS Association posted here in response to her death. Her friends and colleagues at HAS call her a blessing and an inspiration—and a straight-up badass.

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Stavenhagen wrote a memoir, I Want to Dance Again, in French.

If you don’t read French, but you’re ready to learn more about disability and the disability community, take a walk through an accessible art museum by reading Rob Macaisa Colgate’s book of poems, Hardly Creatures.

Whether you read French or not, read Fierce and Delicate, Essays on Dance and Illness, by Renée K. Nicholson.

To learn more about ALS, go to the ALS Association.