When people outside of the ALS community think of amyotrophic lateral sclerosis (ALS), it’s often safe to assume they are imagining of a disease that affects the elderly. Similarly, when many people think about a typical craft beer enthusiast, they’re likely picturing a bearded, flannel and beanie-wearing hipster enjoying a hazy IPA. Her ALS Story is a group whose main mission is to change the former. With their participation in Portland Maine’s upcoming Beers Without Beards event in Portland, ME on April 9th, they will also contribute to changing the latter.
The “Her ALS Story” Story
Her ALS Story was founded in April of 2021 by Leah Stavenhagen, who was diagnosed with ALS at the age of 27. She set out to raise awareness of the diversity of people living with ALS, while creating a community of people who could support each other, by bringing together young women who were diagnosed with the disease before their 35th birthdays.
Sally Stewart, one of Her ALS Story’s founding members, first met Leah in 2019, around the time they both received their ALS diagnoses. She remembers, as a young woman facing an uncertain future with a devastating disease, connecting with someone else in her situation was a reassuring – an empowering – moment.
“We talked for hours,” she remembers. “We were sharing similar experiences – we had very similar symptoms and we're a similar age. So, it kind of eased me for a while, that I wasn't the only way to go to this at my age. It was comforting to know that I wasn't alone.”
Sally and Leah both spent the next few years becoming more involved in activism and meeting other young women with ALS through the ALS community. They found that many shared a common frustration – that so many young women were being diagnosed with a disease that people outside of the community thought of as one that only affected older people, particularly men.
“It became alarming how many of us there were in our age group with ALS,” says Sally, “so Leah had the idea to band us all together. She created an identity for all of us so we can no longer be associated with such an archaic way of describing the unfortunate situation we’re all in.”
Today, Her ALS Story operates a website and social media accounts that tell the stories of the group’s members, provide practical advice for young women living with ALS, and raise money to support the group’s advocacy efforts. Their members have appeared in the national and regional news to promote their efforts and help raise awareness and spoken at ALS conferences and fundraisers. Beyond their outward efforts, they have also served as a personal support group to each other as they navigate the challenges of living with ALS.
“There’s upwards of 30 members now,” says Sally, “it’s really amplified our voices and a lot of us really connect. Recently we started a group chat on WhatsApp we’re on there all-day long trading information back and forth and sharing experiences and opinions. It’s oddly comforting to know that we’re all going through this together.”
Beers Without Beards: Raising Money and Awareness for ALS Research
Helping fundraising efforts for other organizations that help people living with ALS is an important part of Her ALS Story’s mission. One group they’ve joined forces with is Ales for ALS™, a program that partners with brewers across the country to brew unique beers and raise money to support research at the ALS Therapy Development Institute (ALS TDI).
On April 9th, 2022, the two organizations will be at the Beers Without Beards beer festival in Portland, ME to promote both their missions while serving delicious Ales for ALS™ beers from participating brewers. This annual beer festival, which started in 2018, serves as an opportunity to highlight women-owned breweries and celebrate the achievements of women in the craft beer industry.
“There’s about five of us coming from Her ALS Story,” says Alex Cavaliere, a Her ALS Story member who will be attending the festival, “and we’ll have family and friends coming with us to work our booth with us. We’re going to be talking to people about ALS. The night before the actual event, we’re going to be speaking at a meeting for all the participating brewers.”
The organizers of Beers Without Beards are working to spread awareness of women in a space where they are often overlooked. Alex says that mission made it a perfect fit for Her ALS Story.
“Like in breweries, and like in ALS, people think of older men when they think of who brews beer and who has this disease,” says Alex. “But really there has been more and more involvement of women in beer, and we should be celebrating that women are doing amazing things. Along with our group and the breweries, we all need to speak out about it and be in the forefront of people’s minds.”
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