Mourning the loss of a leader, friend, and advocate for women with ALS

In 2021, I participated in a Zoom meeting about ALS community engagement. My husband, Jeff, had passed away from the disease a year earlier, but I have remained involved in advocacy. It was during the meeting that I met a compelling young woman named Leah Stavenhagen. Then in her late 20s, Leah had the innate poise and elegance of someone who had accomplished much in her young life. She was now approaching her ALS diagnosis with creativity and the passion to initiate change. Leah was captivating and easily held the group’s attention.

Her mission, she told us, was to build a community of young women living with ALS. These connections were sorely needed and did not formally exist.

During that first conversation, I learned that Leah was multilingual, lived in Paris with her loving partner, and was a strategy consultant and world traveler. Over time, I also learned that, for all of her sophistication, she was, more importantly, a warm, authentic, and empathetic soul.

In the ensuing years, I watched from afar as Leah connected with other young women who’d been diagnosed with ALS before their 35th birthday, building a powerhouse group of people who are changing the face of ALS. Now 150-plus members strong, Her ALS Story provides a community for these women to connect, learn from each other, and find support so they can live their best lives. It also shows that ALS is not, as many think, an older man’s disease, but can affect people of all ages, genders, races, and walks of life.

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A legacy of community

Leah died last month at age 33, leaving behind deep friendships and a legacy of connecting young women who received an ALS diagnosis at the prime of their lives. Her work and passion have improved the lives of young women with the condition and educated thousands of people about what it means to truly live — to work, travel, parent, experience, and love — with this terminal disease.

Her close friends describe Leah as a “straight-up badass” — elegant and poised, a visionary and fashionista.

“Leah was so welcoming,” Alexandra Cavaliere Gasser, an early member of Her ALS Story and the group’s president, shared with me in an email. “She had a calm, steady presence. As a leader, she was always kind and sought to be fair in all situations. As a friend, Leah was loyal and full of life. She always pushed me to do what made me happy.”

Her ALS Story was the subject of a New York Times story last year that highlighted, among other initiatives, the group’s annual retreat in Cape Cod, Massachusetts, which brought members together to laugh, bond, find common ground, and combat the isolation that can come with living with ALS. The retreat supplements the group’s ongoing communication through group chats and meetings.

Cavaliere emphasized the importance of this community to her sense of purpose.

“Before ALS, I was a corporate attorney. I joined Her ALS Story while I was still working, but when I retired, I felt like I had no identity. My whole life was being a lawyer,” Cavaliere wrote. “Her ALS Story gave me something else to put my energy into. Leah let me run social media campaigns, and that gave me the feeling that I was contributing to the community. I went from feeling like a burden to feeling like I was making a difference.”

As I researched for this column, I read many of the nearly 100 personal stories that Her ALS Story members have shared on the group’s website. They are stories of entrepreneurs, mothers, executives, creatives, volunteers, athletes — young women from all walks of life, and from around the world, who were diagnosed with ALS relatively young and, with each other’s support, are determined to live well with it.

The group’s website notes that ALS can be extremely isolating, but Her ALS Story provides a community that offers instant connection and support. Members say that sharing personal experiences and knowledge is life-changing and helps them normalize their experiences with the disease.

As this close-knit group mourns the loss of their founder, they’ve declared March the “Month of Leah” and are featuring a daily post about their beloved friend on Her ALS Story’s social media. There, they are paying tribute to a woman who created a movement that has changed lives.

“Leah didn’t let anything stop her,” Cavaliere said. “She would see a problem and fix it. She ran an organization with over 150 members and still found time to travel the world. She was an inspiration to everyone she met and her legacy is living within every life she touched.”

You can honor Leah and support Her ALS Story by following their social media, purchasing merchandise (all of which is designed by members), or donating to help fund the group’s fifth annual retreat in August.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues about ALS.