‘Advocacy for my friends’: How ‘Her ALS Story’ is changing the stereotypes about ALS
Last year, Marquee Sports Network profiled Kate Nycz as part of a series of features on Project Main Street, a grassroots organization committed to ALS patient care. During our conversation, Kate discussed having recently met a new group of “fired up” women dedicated to raising awareness for ALS. This year, we’re honored to share the story of Her ALS Story, committed to changing the stereotypes about ALS.
When Leah Stavenhagen was diagnosed with ALS at the age of 26, she felt isolated in her battle against Lou Gehrig’s disease, an illness more commonly seen both among men as well as the older population.
“I felt like I looked out there and there weren’t any strong female faces,” says Stavenhagen. “You feel like you’re the only one who has to go through this at a young age.”
As it turns out, she is far from the only young woman diagnosed with ALS, and her story is now shared alongside a group of more than 30 women from all over the world – joining a group that nobody wants to be in, but through which each member has found hope, motivation and a sense of purpose.
Founded in April of 2021, Her ALS Story started as the brainchild of Stavenhagen and Chicago-native Lori Andre, who met as part of their work on the community outreach team for the Chicago-based organization, I Am ALS. Andre, who owns Lori’s Shoes in Lincoln Park, has been committed to ALS research and care since her husband, Brian, was afflicted with the disease in 2016.
Stavenhagen and Andre recognized the need to bring awareness to young women diagnosed with ALS.
“We needed everyone to understand that ALS is not your typical middle-aged white man disease, it can affect anyone at any time – any race, any gender, any ethnicity,” said Andre, who will be in attendance at Wrigley Field on Lou Gehrig Day alongside more than 100 people impacted by ALS. “This is a disease of heterogeneity, everyone has a different ALS.”
When first hearing about the group, Nycz admits that she was hesitant about committing to another group.
“I was shy initially because with every other group I’ve been a part of, I’ve been at least 20 years younger and, more often than not, the only female,” said Nycz, who was diagnosed with ALS at age 32. “So, the conversations were never quite what I needed and with this disease, you’re constantly weighing what’s worth your energy.”
But after joining her first group meeting for Her ALS Story, Nycz, like the others that have joined, recognized what an awesome collection of strong women this was and the unlimited potential of a group of motivated women, beginning with the opportunity for new friendships.
“These people get your life. They have a lot of the same struggles. When you have so much in common, you can be instant friends,” said Stavenhagen. “With such a diagnosis, for me, of course I had friends from childhood and college, but new friendships I thought wouldn’t be possible because I have so many challenges in my life. But now I do have all these new friends, so it boosts your spirits.”
It’s a friendship built through a shared experience and an ability to relate to each other in a way that nobody can fully understand unless they’ve also gone through the battle.
“It’s natural, it’s organic, we feel so comfortable,” said Gwen Petersen, who was diagnosed with ALS at age 32, “Some of us have lost our ability to speak, but we understand body language. Messages don’t have to be verbal … the non-verbal communication is just as strong and beautiful.”
The group holds biweekly hour-long Zoom meetings, but the members are also in contact 24 hours a day through a WhatsApp chat and the group is even planning its first-ever wellness retreat this fall in Wisconsin – an opportunity for the group, as well as their partners and caregivers, to get together for self-care, both mental and physical.
While the group’s meetings and discussions are filled with “productive stuff,” such as coordinating fundraising, sponsors and legislative advocacy, the conversations also deal with the real issues the women are facing every day, including topics that often don’t come up in traditional group meetings with men, such as how ALS impacts one’s ability to get pregnant and raise a family.
“It’s always a range of emotions [talking about raising a family] from sadness to anger, it’s just a flood of emotions,” said Petersen. “It’s one of those topics that for me, it hasn’t gotten any less raw [since being diagnosed four years ago], but I need to talk about it because it’s real. So, hell yeah we talk about it, we need to get it out there.”
“Nothing is off limits … we come up with different techniques, different products that people are using. This place has been a gold mine,” said Nycz. “These women at a baseline understand that for me better than any group.”
“I do a lot of ALS advocacy work, but this group, Her ALS Story, brings me back to center,” said Petersen. “It’s more at the core of who I am.”
“Moving the science forward”
Her ALS Story is more than just a social group though – it’s also a powerhouse group of women dedicated to making a difference in ALS research, and ensuring that the medical research factors in women and young people.
“Look at us for clinical trials when you’re looking at patient groups,” said Stavenhagen. “If they’re only taking 60-year-old white men, and doing all the research off that, that’s not good for us.”
“I’m passionate about being directly a part of the research,” said Petersen, who has taken part in clinical trials for drugs, though she doesn’t know whether she took the drug or a placebo. “Being in that trial brought me hope, and I know I was moving the science forward.”
As much as science has improved, and make no mistake, the scientists are trying as there are more drugs in the clinical trial pipeline than ever before, there just has still been little in the way of major breakthroughs in curing, or even treating, the disease.
“We need more money and we need faster movement around research,” said Nycz, who notes she has been on several clinical trials, but isn’t sure if they are really working. “There’s just nothing that knocks your socks off yet and really gives you that hope for a big change unfortunately.”
ALS is a disease with no easy diagnostic test, but rather the end result of a painstakingly long process of ruling out other illnesses before finally landing on ALS.
While the waiting is the toughest part for many, Stavenhagen notes that for those waiting for diagnosis, that they can at least continue on with their life in the meantime as long as their physical symptoms allow.
“I’m thankful that I had a year where I had symptoms, but I didn’t realize how serious it was, because I could still go about my life,” said Stavenhagen. ”Because there weren’t any good treatments anyways, and there still aren’t.”
“Advocacy for my friends”
But despite the slow movement in research, Her ALS Story provides hope in the power of numbers, and the comradery of a group that can be vulnerable with each other leading to tears, and then sharing the ability to laugh about it together as best they can.
“I was done with my job and I did not know what I was doing. I was just sitting there, feeling like I had no purpose,” said Alex Cavaliere, diagnosed with ALS at age 28. “And this group gives me that purpose. And the purpose is not just advocacy for ALS, but advocacy for my friends. It’s given me a sense of belonging that my life is worth something.”
And when you’re in a Zoom call with your close friends, it’s those kinds of heartwarmingly sincere comments that lead to inevitable crying from the group, and then laughter as the group commiserates in their shared experience.
“Way to go, Alex,” Kate jokes in response to Alex’s comment leading to tears in the group. “This is just part of the disease, none of us can help it. The vulnerability to be able to cry in that moment, with each other, you don’t get that in a big group.”
“All of us are here because we want to make good on this diagnosis,” said Sunny Brous, diagnosed at age 27. “Being diagnosed for 7 years, I’ve done the big-name stuff, I’ve done the political stuff, I’ve done the guinea pig stuff – but this group is for us.”
“Simply said – we like to get together and have fun. And that is a breath of fresh air,” said Petersen.
“It’s just so incredible to see the strength of coming together,” said Stavenhagen. “Why didn’t this exist before? That’s the craziest thing to me. Because everybody is so happy to have found it, and we get so many compliments and such positive feedback for the work that we’re able to do and the messages we’re sending out. I’m just so thankful to these women that we’ve all found each other.”
Raising awareness for ALS
This year’s second-annual Lou Gehrig Day across Major League baseball is another opportunity for ALS awareness to grow at ballparks across the country, and spark a round of fundraising that will be essential for the care of those currently living with the disease and help to finally find the cure for a disease.
“Lou Gehrig Day is huge. It’s cool that people can donate to the organization of their choosing, so the money can get spread around,” said Petersen. “There are so many important organizations out there like Project Main Street, Team Gleason, I am ALS, and more. All of them have different focuses and missions, and you can support what you’re passionate about.”
To learn more about these incredible women, including additional bios and stories, plus merchandise and donation links, visit the Her ALS Story website.
Tune-in on June 2 as Marquee Sports Network honors Lou Gehrig’s legacy with a special game broadcast dedicated to raising money and awareness to fight ALS and find a cure.