About Her ALS Story

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.

Our Mission

Her ALS Story strives to educate the public that ALS does not discriminate. People of all ages, races, locations and genders develop the disease. 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.

ALS is extremely isolating, but Her ALS Story provides a community for our members that offers instant connection and support. Sharing personal experiences and knowledge is life-changing and helps us normalize our experiences with ALS. Knowing we’re not alone in this fight is empowering.

Together, we use our stories to raise ALS awareness and advocate to deliver better therapies to ALS patients faster, partnering with ALS nonprofits including Project ALS, I AM ALS and ALS TDI to support research and legislative initiatives. We are committed to using the time we have left getting ALS the attention it needs to finally end the disease.