Leah Stavenhagen, Paris,Visionary Founder of Her ALS Story And A Founding Member of Patient Advisory Committee Has Passed Away
The Target ALS community is heartbroken to share the passing of Leah Stavenhagen, a founding member of our Patient Advisory Committee and the visionary founder of Her ALS Story. We grieve alongside the entire ALS community, mourning a leader whose presence, voice, and advocacy were profoundly impactful.
Leah was kind, witty, generous, and extraordinarily strong. Diagnosed with ALS at just 26, she chose not to retreat, but to meet the disease head-on. She built a powerful, dedicated community for women diagnosed before 35, creating vital space for connection and support. Her mission was clear: to ensure no young woman facing ALS would ever feel alone.
At Target ALS, we were privileged to learn from Leah’s direct counsel. She generously shared her perspective, tirelessly guiding our work toward greater awareness and a deeper understanding of the lived experience of ALS. Leah refused to let ALS define her limits; instead, she defined her life on her own terms with remarkable courage.
We will miss her deeply, as will countless others she inspired. Our hearts are with her husband, her parents, and all her family and loved ones. Her legacy of resilience and community endures.
