Online ALS Advocacy Group Founder Leah Stavenhagen Dies at 33, Nearly 7 Years After Her Terminal Diagnosis

Stavenhagen launched Her ALS Story in April 2021, about two years after she was diagnosed with the terminal neurodegenerative disease

NEED TO KNOW

• Advocate and nonprofit founder Leah Stavenhagen has died at 33, nearly seven years after she was diagnosed with amyotrophic lateral sclerosis (ALS)
• Her death was announced on Sunday, Feb. 22, with an Instagram post by her organization, Her ALS Story, which Stavenhagen launched about two years after her diagnosis
• Her ALS Story brings young women living with the neurodegenerative disease together and works to debunk misconceptions about ALS

ALS advocate and founder Leah Stavenhagen has died at 33, almost five years after she launched Her ALS Story and nearly seven years after she was diagnosed with amyotrophic lateral sclerosis (ALS).

Her death was announced with a post shared to the organization's Instagram page on Sunday, Feb. 22. The carousel of photos showed Stavenhagen over the years, throughout her progression living with the disease.

"We are devastated to announce that we have lost our fearless leader, Leah, at age 33," the caption began. "While the typical sentiments are that Leah was a blessing and an inspiration—and she was—she was also a straight-up badass. She was a trailblazer. She was someone you wanted to be friends with. She had stunning fashion sense. She was a world traveler, along with her amazing and loving husband, Hugo."

The post continued, "Leah saw a world where something was missing and, instead of accepting it, changed it. She created a community of women that has literally saved lives. It is so strange to talk about Leah in the past tense because she is everywhere we look."

Her ALS Story is made up of a collective of women diagnosed with the terminal neurodegenerative disease before their 35th birthdays. Per the nonprofit's Instagram bio, it focuses on "challenging the stereotype that ALS is an old white man’s disease."

According to Mayo Clinic, ALS affects nerve cells in the brain and spinal cord, causing loss of muscle control that gets progressively worse over time. The life expectancy from the time of diagnosis for a person with ALS is three to five years. There is no cure for ALS, which is also known as Lou Gehrig's disease.

Stavenhagen's best friend, Gwen Petersen, who also serves as a Partnerships Co-Lead for Her ALS Story, tells PEOPLE that the late founder created the organization after identifying "a gap in the spotlight on younger people living with the disease, in particular young women."

The Her ALS Story mission statement underscores its educational goal, namely, in debunking the misconception that the illness only affects people of certain ages, races or genders. The organization's website spotlights the stories of a number of young women living with ALS.

"She collected stories of other young women in their 20s and 30s living with ALS, and she saw that many of our stories are similar — eerily, similar — from the time it took to get a diagnosis to the time in our lives we were at," says Petersen, who had her own difficulties getting a thorough diagnosis due to many doctors dismissing her ALS symptoms as effects of anxiety.

At the time when Stavenhagen was diagnosed in 2019, she was working as a consultant in Paris, living with her partner, Hugo, whom she went on to marry after she was diagnosed with ALS.

"Either we were single and dating, or we had recently found our person and were newly engaged, or newly married and family planning," Petersen continues. "In a lot in a lot of that commonality, there was also a lot of sorrow and grief. We were grieving what our lives could have been, and what we had worked so hard for personally and professionally, all to be kind of taken away."

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer​​, from celebrity news to compelling human interest stories.

The Her ALS Story mission statement emphasizes the same sentiment to explain why Stavenhagen felt compelled to build the community.

"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," reads the mission statement. "ALS is extremely isolating, but Her ALS Story provides a community for our members that offers instant connection and support."

In addition to bringing together a network of women, the group also hosts an annual retreat for Her ALS Story members, their families and their caregivers. People can help raise funds for the 2026 trip through the donation link on the nonprofit's website.

Read the full article here