Amyotrophic lateral sclerosis (ALS) is often thought of as an older white man’s disease. While they are the most likely to receive the diagnosis, they are not alone. In fact, 45% of all cases are women, and in 10% of cases, patients are under the age of 45. Leah Stavenhagen (AB ’15) was one of those, diagnosed with ALS at only 26 years of age.
Before her diagnosis, Leah was like most women her age, just embarking on her career. She graduated from the University of Michigan with degrees in political science, comparative literature, and French. During this time, she met her eventual husband, Hugo Taubmann, whom she followed to Paris, where she received her business degree and began working at EY.
In the first year Leah was diagnosed, she dealt with it for the most part on her own. She first became involved with current ALS advocacy organizations, particularly I AM ALS. She found many fantastic community-building programs, but nothing really for younger people. After sharing her story with I AM ALS, she received responses from a few people who were like her, young women with ALS. Leah found Her ALS Story in 2021 with 10 of those people, which today has over 120 members worldwide.
Her ALS Story’s efforts are two-fold. Externally, the goal is to raise awareness about the disease with a special emphasis on more funding for research. Internally, Her ALS Story is building a community, a space where young women with ALS can come together.
