Hi, I’m Leah! My ALS journey began in the spring of 2019 when I finally learned that there was a clear explanation for why my active body couldn’t quite keep up with my peers. At the time, I yearned to find others like me - young women that were also learning to cope with rethinking their dreams in the face of a fatal disease.

Fast forward two years, I decided that I was ready to devote myself to ALS advocacy. I quickly became connected with I AM ALS and advocacy rockstar, Lori Andre. With their support, I spearheaded a campaign called #InHerALSShoes in order to refute the stereotype that ALS is an older white man’s disease – it does not discriminate based on age, gender or race.

From the success of this campaign, I formed Her ALS Story in April 2021 with the hope of creating a network for young female pALS to lean into. I was also motivated by my belief that as young women who are constantly faced with the harsh realities of ALS, our voices are especially powerful in revolutionizing treatment options and finding a cure.

Today, we have 100+ members worldwide and work in partnership with organizations like I AM ALS and Project ALS. There is already a lot of great work being done, and, as a result, we're not looking to reinvent the wheel; we're collaborating with existing organizations to strengthen their efforts, as well as focus on our specific initiatives to highlight what it’s like to be young women living with ALS.

On February, 19th, 2026 we lost our fearless leader, Leah, at age 33. 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 a stunning fashion sense. She was a world traveler, along with her amazing and loving husband, Hugo.

Leah saw a world where something was missing and, instead of accepting it, she 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 and its members will continue to carry on her legacy in this space she created and her story will continue to echo through us.