Five Years of Her ALS Story
By: Michelle Stellato
Each April brings a lot of nostalgia for me as my mind goes to the inception of Her ALS Story. This year feels extra sentimental given the recent passing of our founder, Leah. Looking back on five years, I'm reminiscing on the early days when a handful of us were first connecting over video calls and first discovering the magic of our bond. We had no idea what Her ALS Story would grow into. We have more than 100 active members across 6 continents that are receiving support through our community. We've partnered with fashion brands, ALS non-profit organizations, and small businesses on projects. We've watched our social media following soar. We've appeared on news outlets, podcasts, red carpets, and stages to raise awareness. Here are a few highlights that come to mind.
Our Launch
It was so exciting to become official with a logo, website, and social media accounts for Her ALS Story. Leah, Sarah Gascoigne, Gwen Peterson, Alex Cavaliere, Angelina Fanous, Mayuri Saxena, Sally Stewart,Teri Dillon, and I were on the first call. We talked about getting support from legislators, getting attention from the media and building a community. We started with our stories and soon began to build partnerships that really elevated our advocacy. We started a WhatsApp chat that never seemed to stop chirping and set up bi-weekly video calls. Our membership grew from just 9 members to more than 40 in the first year. We had started a movement.
Badassery
At the 2021 Project ALS Gala, HAS took the stage at a star-studded, black-tie affair at Cipriani in Manhattan. Leah, Alex, and I spoke about what it means to develop ALS as a young woman and how urgent new treatments are. Leah ended the speech with saying we stand for badassery, and we received a standing ovation. That moment is burned into my memory. Our partnership with Project ALS continues and we had the honor to speak again at the 2023 Gala where Leah, Gwen Peterson, Blaine Dangle, and I took the stage. Her ALS Story also attended and were beneficiaries of the Couer Blanc 2024, a skiing fundraiser in France, alongside Project ALS, and participated in a panel discussion at their 2025 Women and The Brain event.
Beer Without Beards
One of the first opportunities for our members to meet in person was at the Beers Without Beards festival in Portland, Maine in the spring of 2022. We partnered with Ales for ALS which raises funds for research at ALS Therapy Development Institute (TDI). The festival highlighted females in beer brewing, a field often associated with men, making it a perfect fit for our mission. Alex Cavaliere, Erin Vierstra, Desi Kessler, Sunny Brous, and Kate Nycz attended to raise awareness and funds for research while enjoying a couple brews. The group spoke to participating breweries.
TDI Award
At the ALS TDI Summit in 2022, Her ALS Story was awarded the Stephen Milne Award for leadership. Andrea and Alex accepted the award on behalf of Her ALS Story. Afterwards Alex, Andrea, and Gwen attended the White Coat Affair. We also presented at the 2025 Evening of Innovation hosted by ALS TDI alongside the son of Morrie Schwartz, from the book Tuesdays with Morrie by Mitch Albom. Kaitlin Gonzalez, Desi Kessler, and I read passages from the book and shared the personal meaning of the words.
Trailblazers
Emotions were high when we accepted the Jaci & Alex Hermstad Trailblazers award during a virtual event hosted by Charles River in 2022. Alex and Jaci Hermstad were incredible young women who were fierce advocates. When Her ALS Story was honored with their namesake award, it was surreal to be put in the same realm. We feel a special connection to them given ALS had taken them so early in life. Jaci was 26 and Alex only 17. Members Including Kaitlin Gonzalez, Sarah Durand, and Erin Viersta joined panel discussions and then the group was honored in a tearful ceremony led by Alex and Jaci’s mom, Lori Hermstad. I have the plaque on my mantel to this day.
Magic in Madison
After two years of chatting online, our late member Erin Vierstra came up with a big idea. What if we took our virtual connection to the next level and met in person as a group? She planned the perfect retreat in her hometown of Madison, Wisconsin. The trip was focused on wellness activities like massage, acupuncture, and facials, and shared experiences like a boat cruise and a tour of the Capitol building. About 20 girls from across the country attended. For the first time, we felt normal and being together in person deepened our bond incredibly. We've continued this tradition in honor of Erin and it's now known as our annual Warrior Weekend.
Honored by the MDA
A definite stand out moment was attending the MDA Wings Over Wall Street event as the 2022 honoree. Leah, Alex Cavaliere, Gwen Peterson, and Kaitlin Gonzalez spoke and accepted The Spirit Award, given to people who have extraordinary commitment to the eradication of ALS by raising awareness and funding for a cure. It’s a high honor in the ALS world previously awarded to ALS heroes like Steve Gleason and Pat Quinn. The event has raised over $13 million for ALS research throughout the years.
The Big Leagues
Thanks to our sister Sarah Langs, MLB writer, researcher, and one of the league's brightest statistical minds, HAS was included in the 2023 Yankees’ HOPE Week. Sarah was the HOPE Week honoree and requested to include us. On the 84th anniversary of Lou Gehrig's famous farewell speech, we participated in an on-field ceremony with Yankees players. Our voices along with the players were weaved together with Lou Gehrig's reciting the speech which played on the stadium screen as we stood on the field. We received a tour of the stadium and entry into the press conference before the game. Beth Hebron, Desi Kessler, Gwen Peterson, Alex Cavaliere, Leah, and I were blessed with the experience.
Our Red Carpet Moment
One of my favorite photos of HAS is this stunning shot of our members on the red carpet at the Team Gleason Game Changer Gala rubbing wheelchairs with Steve Gleason. Leah, Desi Kessler, Sunny Brous, Gwen Peterson, Jayme Pellegrin, and Kate Nycz met in New Orleans for the affair which was well attended by celebrities and pro athletes. Her ALS Story was named a 2025 Game Changer along with Drew Brees and John Driscoll Hopkins. The event itself and the trip to New Orleans was unforgettable for our sisters.
Little Words, Big Meaning
This month, we are partnering with Little Words Project to honor Leah's legacy and recognize our fifth anniversary. Little Words Project is best known for their bracelets with encouraging phrases meant to be swapped with loved ones. The bracelet says dance again, a nod to the title of Leah's book. Proceeds of the sales go to Her ALS Story and help support our annual Warrior Weekend retreat. Spreading awareness with fashion is just so Leah, so this collaboration is a special one for us.
Our Future is Bright
It's impossible to list all of the major milestones for HAS, but these are a few that stand out in my memory. I look forward to the future and bringing new faces into the fold, especially as we expand internationally. It's a double-edged sword as the organization grows. I hate knowing more women are suffering, but it's comforting to know they aren't fighting alone. Like we say to every new member, it's the best club that you never wanted to be a part of.
As I look to the next five years for HAS, I see an exciting future. I see us appearing on more stages, publications, and social media campaigns to educate a broader audience. As we continue to expand our reach through HAS+ (chats for an expanded community including men and women living with ALS under 45, women diagnosed after 35, mothers of women in HAS, and partners of young people with ALS) we’ll offer support to even more people affected by this disease. Another great opportunity is our engagement with the research community beyond participating in trials. We’re actively cultivating partnerships with research teams to uncover biological risk factors for ALS and to understand the unique challenges that young women with ALS face. Ultimately, I see playing a pivotal role in ALS advocacy and contributing to finally finding a cure. So we have some work ahead of us.