Leah Stavenhagen, Advocate for Young Women With A.L.S., Dies at 33

Leah Stavenhagen, 33, died on Thursday during a trip to Egypt while traveling with her husband in El Gouna. The couple lived in Paris. She was diagnosed with A.L.S. in her 20s while living in Paris after noticing that her toes were dragging when she walked. "I thought there was just something wrong with my foot," she said, and it took almost a year to receive a diagnosis because there is no definitive test and doctors do not expect to see the disease in young women.

In 2021 she started Her A.L.S. Story to raise awareness among young women and to provide community; the group is fully run by women with A.L.S. and grew from a core group of about 10 to over 160 members by last summer. The organization held annual retreats, maintains an active WhatsApp chat with more than 100 participants, and sought to refute the stereotype that A.L.S.

is an "older white man’s disease." Members said the group brought hope: "Leah created a community that gave us light in the darkness of this diagnosis," one participant said. Born in Seattle, Ms.

Egypt, El Gouna

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