Leah Stavenhagen

Leah Stavenhagen (1993 – February 19, 2026) was an American advocate for women with Amyotrophic Lateral Sclerosis (ALS). She was the founder of the nonprofit organization Her ALS Story.

Biography Stavenhagen was born in Seattle and lived in multiple cities, including Copenhagen, when she was growing up. She enjoyed dancing and synchronized swimming.

Stavenhagen founded Her ALS Story in 2021 to raise awareness and provide a community to young women experiencing ALS, and challenge the image of the disease as something that solely afflicted men like Stephen Hawking or Lou Gehrig. At the time of her death, the group had more than 160 members. The group meets via Zoom calls and holds an annual retreat in Massachusetts.

An avid traveler, Stavenhagen died while traveling in Egypt on February 19, 2026. She was 33.