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Terminal ALS Advocate Leah Stavenhagen Dies at 33

2/24/2026

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Summary

Story summary

Leah Stavenhagen, diagnosed with terminal ALS in her 20s, died at age 33 during a trip to El Gouna, Egypt, with her husband.
She lived in Paris and founded the support group Her A.L.S. Story in 2021 to raise awareness of ALS among young women.
She initially dismissed symptoms as minor and faced diagnostic delays because ALS is rare in young women.

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Story summary

Leah Stavenhagen, diagnosed with terminal ALS in her 20s, died at age 33 during a trip to El Gouna, Egypt, with her husband.
She lived in Paris and founded the support group Her A.L.S. Story in 2021 to raise awareness of ALS among young women.
She initially dismissed symptoms as minor and faced diagnostic delays because ALS is rare in young women.