Leah Stavenhagen, a notable advocate for those coping with amyotrophic lateral sclerosis (ALS), has sadly passed away at the age of 33. The announcement of her death was made on February 22 and shared via an Instagram post on the social media account of her non-profit organisation, Her ALS Story. Stavenhagen, who was diagnosed with the disease in 2019, founded the organisation two years later to address a significant gap in support for younger women facing this debilitating condition.
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Her ALS Story was established with a clear mission: to connect young women living with ALS and challenge the pervasive misconceptions surrounding the illness, which is often wrongly perceived as predominantly affecting older men. During her tenure, Stavenhagen became a vital figure in advocating for this community, which includes those diagnosed before their 35th birthday.
The Instagram post from Her ALS Story reflected on Stavenhagen’s vibrant spirit and the profound impact she had on those around her. The caption noted the organisation’s loss, stating, “Leah was a blessing and an inspiration – she was also a straight-up badass. She was a trailblazer, someone you wanted to be friends with.” The post also acknowledged her love for life and her husband, Hugo Taubmann, with whom she shared a deep bond during their time together, even amidst the struggles brought on by her diagnosis.
At its core, Her ALS Story plays a crucial role in bringing together young women who grapple with this life-altering diagnosis. Stavenhagen’s best friend and co-lead for partnerships at the organisation, Gwen Petersen, articulated that Leah identified a significant lack of visibility for young individuals, particularly women, living with ALS. Many members of this community echo similar narratives surrounding their journeys towards a diagnosis, often laden with frustration and grief.
Petersen shared insights into how Stavenhagen’s own experiences resonated with other young women. “She collected stories of other women in their twenties and thirties living with ALS,” Petersen explained. This work included addressing the shared struggles many face in seeking a timely diagnosis, often dismissed by medical professionals as symptoms of anxiety rather than serious neurological issues.
Stavenhagen’s own diagnosis came while she worked as a consultant in Paris, where she lived with Hugo. Despite the challenges she faced, she remained dedicated to building a community for others in similar circumstances. The mission statement of Her ALS Story poignantly illustrates the duality of hope and sorrow experienced by members: “At a time in their lives when most women are establishing careers, finding partners, and growing families, we were dealt a terminal diagnosis with no available treatments to stop or reverse the disease.”
A significant aspect of the organisation’s effort includes hosting an annual retreat that allows members, their families, and caregivers to connect and share their experiences in a supportive environment. This initiative not only strengthens community ties but also uplifts those who may feel isolated due to their diagnosis.
The loss of Leah Stavenhagen is deeply felt across the ALS community and beyond. Her influence and legacy will continue to inspire future generations of advocates and those facing the disease. Support for Her ALS Story remains critical as it continues to foster a sense of belonging and understanding among young women living with ALS.
In memory of Stavenhagen, supporters are encouraged to contribute to the non-profit, assisting in the building of resources and events that honour her vision and the community she so passionately served. The upcoming 2026 retreat seeks to bring together further connections and support, ensuring that Stavenhagen’s commitment to this cause endures as a beacon of hope for others navigating the complexities of ALS.
Overall, the impact of Leah Stavenhagen’s life and work reverberates far beyond her years. Through Her ALS Story, she has created a legacy of strength, unity, and resilience, offering solace to countless women grappling with the challenges of ALS.