Leah Stavenhagen, whose diagnosis with the terminal neurodegenerative disease A.L.S. while in her 20s inspired her to start a support group for other young women, died on Thursday during a trip to Egypt, her family said. She was 33.
Ms. Stavenhagen, an intrepid traveler who relied on a wheelchair and a breathing machine, was with her husband in El Gouna, Egypt, when she died, family said. The couple lived in Paris.
Ms. Stavenhagen was diagnosed with A.L.S. while living in Paris, after she noticed that her toes were dragging when she walked. She dismissed the symptoms at first, convinced they were nothing serious.
“I thought there was just something wrong with my foot,” she said last year in an interview with The New York Times.
It took Ms. Stavenhagen almost a year to receive a diagnosis, both because there is no definitive diagnostic test and because doctors don’t expect to see the disease, which occurs more commonly in men and older individuals, in young women.
The group Ms. Stavenhagen started in 2021, called Her A.L.S. Story, aimed to raise awareness about the disease in young women, and to provide community to those diagnosed as young adults.
It is fully run by women with A.L.S., and as of last summer it had grown from a core group of about 10 people to over 160 members.
Part of the group goal is “to refute the stereotype that A.L.S. is an older white man’s disease” and to show people that the illness “does not discriminate based on age, gender or race.”
But “A.L.S. is just one aspect of our lives,” Ms. Stavenhagen said to The Times. “It’s important for others to see that this community is living normally.”
Her A.L.S. Story held annual retreats that drew dozens of women from across the United States, and from as far away as Europe. Over 100 women are actively engaged in the group’s WhatsApp chat, maintaining a constant stream of communication as they exchange tips and make jokes — often about their condition.
“Leah created a community that gave us light in the darkness of this diagnosis,” said Sunny Brous, a member of Her A.L.S. Story in Hico, Texas, who attended the group’s retreat in Cape Cod last summer. “She took what was missing from our lives and turned that heartbreak into hope.”
Ms. Stavenhagen, who was born in Seattle, moved frequently while growing up. She became a dancer and synchronized swimmer, and spent her teen years in Copenhagen.
She returned to the United States for college, graduating from the University of Michigan in Ann Arbor in 2015 with a triple major in French, political science and comparative literature.
She worked briefly in New York City and then moved to Paris, where she lived with her future husband, Hugo Taubmann, earning a master’s degree in business at HEC Paris and working as a consultant.
Ms. Stavenhagen and Mr. Taubmann celebrated their fifth wedding anniversary last October, her mother, Susan Stavenhagen, said.
After her diagnosis, Leah Stavenhagen wrote a book in French about the ordeal, called “I Want to Dance Again,” her mother said.
Ms. Stavenhagen is survived by Mr. Taubmann; her parents, Susan and Jeff Stavenhagen; her sisters, Melissa and Emma Stavenhagen; her maternal grandmother, Barbara Asbury, and paternal grandmother, Geri Stavenhagen; and many aunts, uncles and cousins.
“Leah was such a fighter,” her mother said. “She had us fooled by her energy, joie de vivre, and desire to live as normally as possible, so that we often lost sight of how vulnerable she was.”
“We were dumbfounded when she passed,” she said, “devastated at the loss of a light that brought sunshine and clarity into our lives.”
Roni Caryn Rabin is a Times health reporter focused on maternal and child health, racial and economic disparities in health care, and the influence of money on medicine.
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