Dies at 33 After Nearly 7-Year Battle with ALS

Dies at 33 After Nearly 7-Year Battle with ALS

 

Leah Stavenhagen, founder of the nonprofit **Her ALS Story**, has died at the age of 33, nearly seven years after being diagnosed with amyotrophic lateral sclerosis (ALS).

 

Her death was announced on Sunday, Feb. 22, in an emotional Instagram post shared by her organization. The tribute described her as a “fearless leader,” a trailblazer, and someone who created a powerful community for women facing the same devastating diagnosis.

 

Stavenhagen was diagnosed with ALS in 2019 while working as a consultant in Paris. At the time, she was living with her partner, Hugo Taubmann, whom she later married after her diagnosis.

 

In April 2021, about two years after learning she had the terminal illness, she launched ****. The nonprofit was created to support young women diagnosed with ALS before the age of 35 and to challenge the misconception that ALS only affects older white men.

 

The organization shares personal stories from women in their 20s and 30s navigating life with the neurodegenerative disease. It also hosts annual retreats for members, their families, and caregivers, providing connection and emotional support in what can often feel like an isolating journey.

 

ALS, also known as Lou Gehrig’s disease, is a progressive condition that affects nerve cells in the brain and spinal cord, leading to loss of muscle control. According to the , the average life expectancy after diagnosis is typically three to five years, and there is currently no cure.

 

Friends and colleagues say Stavenhagen recognized a gap in visibility for younger patients — especially women — living with ALS. Instead of accepting that reality, she built a space where women could connect, share their experiences, and feel understood.

 

Her mission focused not only on awareness but on community — bringing together women who were often in the prime of their lives, building careers, relationships, and families, only to be confronted with a terminal diagnosis.

 

Through Her ALS Story, Leah Stavenhagen leaves behind a lasting legacy of advocacy, courage, and connection.