When Kate Nycz Gorjup was first diagnosed with ALS seven years ago, at the age of just 33, she says that she had trouble finding others in the community she could relate to. That changed when she became involved with Her ALS Story (HAS), an organization for women diagnosed with ALS before the age of 35. The group, founded by Leah Stavenhagen after she was diagnosed with ALS in her mid-20s, seeks to provide a community for young women facing the disease and to organize them to advocate for their unique needs in the ALS space.

“Every other support group or event that I attended, it was always older adults,” says Kate. “There were a lot of older white men, people who didn't understand me and where I was at in life. I got married three months after my diagnosis. I was facing whether I should have children, and thinking about whether I could keep working. Finding this group of women helped me get through the hardest questions I was encountering.”

The Power of In-Person Gathering

At first, the group came together and connected with each other primarily online. However, after a small group of HAS members got together at a beer festival in 2021, Kate says that they quickly recognized the uplifting power of meeting in person. Soon, they were discussing the possibility of a larger, multi-day gathering.

Five months later, the first Her ALS Story retreat was held in Madison, Wisconsin. 15 women from around the country travelled to the city for a weekend of activities, all planned by HAS member Erin Vierstra.

“Erin organized massages, facials, acupuncture, all sorts of wellness activities,” says Kate. “She organized a trip to the Capitol building, a night out at a restaurant, a boat ride on the lake, the sort of things that we felt like we’d never do again because of ALS, but we gathered and accomplished it. That began our annual retreat.”

Cape Cod: Finding the HAS Retreat’s Long-Term Destination

The following summer, the women of HAS decided to gather again, this time on the beach. They chose the town of Falmouth on Cape Cod as their new destination. Erin had passed away in the year since their Madison retreat, so Kate stepped in to take the lead on organizing the trip. She coordinated reservations at a hotel with accessible rooms, put together an itinerary of beach-town activities, and worked to gather the equipment that all 26 women who attended might need.

An essential partner in putting this together was Compassionate Care ALS (CCALS), an organization based in nearby West Falmouth that specializes in supporting people and families dealing with ALS. CCALS helped source equipment, plan accessible activities, and provided support during the retreat. Kate says that, while the original plan was to hold the retreat in a new location every year, the close-by presence of CCALS was enough to convince the group that Cape Cod should be its permanent home.

“I feel spoiled living here in Boston, " says Kate. “We've got ALS TDI, the University of Massachusetts, the Healy Center at MGH, all crushing research and supporting in the hope for a cure. Then there’s Compassionate Care ALS (CCALS). Every piece of equipment I’ve needed in seven years, they've come through and said, ‘Not a problem, let us help you, get it before you need it, be prepared for the next phase.’ So, when I started looking locally, I asked them if they would support us with equipment needs and help us work with the hotel.”

The 2025 Her ALS Story Retreat

On Sunday, August 24th, 36 young women with ALS will travel to Falmouth for the 2025 HAS retreat, coming from all over the US and as far away as Sweden. It will be their third time holding the event on Cape Cod. After flying into Boston and making their way to the Cape, Kate has organized a full itinerary for the group, starting with a happy hour and dinner at their hotel overlooking the ocean.

“Traveling with ALS is exhausting,” she says. “On day one, we just want to feed you and get you settled. Then, on Monday, we are hosting a beach day. We’ll have nine different beach wheelchairs gathered from the local beaches as well as the hotel. We’ll enjoy the sun and the sand, get in the water, and hang out. Then we'll have dinner and an outdoor movie.

On Tuesday, we'll offer a glam and makeup day. We have volunteers coming to do our hair and makeup. A lot of us have difficulty with our hands, and makeup is not usually worth our daily time or energy. So, to be made up is a nice change. Then we'll be off-site at a local farm where we are having a catered dinner and a drag show. We’ll all get glittered up and wear bright colors and sequins and enjoy an entertaining evening.”

For Wednesday, the retreat’s final day, the group will be back on the beach to enjoy more time in the sun and the water. In addition, the CCALS team will join them for a tech demo, providing training on the use of assistive equipment like smartphone apps and Tobii eye gaze devices. Then, on Thursday, the group will drive or fly home.

The Logistics of an ALS Retreat

Organizing and executing such an eventful group vacation would be no simple task for anyone. But for a group of people with ALS, the logistical challenges could be overwhelming. HAS is run by members living with ALS and therefore requires all-hands-on-deck. Kate acknowledges her major other half for pulling off a successful event is Blaine Dangel. Blaine organizes spreadsheets and surveys to ensure everyone's needs are met. Thanks to the efforts of the HAS team, along with their partners at CCALS and the caregivers who accompany them, Kate says that they have been able to make sure everyone’s needs are met.

A majority of HAS members rely on wheelchairs to get around, from lightweight travel models to 300-pound powerchairs, depending on their needs. For those who need power chairs that are difficult or impossible to bring on air travel, the group works with a local company that provides rentals and accessible shuttles from the airport to the Cape. Once there, they coordinate with local attendees who have accessible vans to get everyone around from activity to activity.

The rooms where the attendees stay can also pose significant challenges. While their hotel provides a certain number of accessible ADA-compliant rooms, there are not enough for all attendees. Even those with ADA rooms often find that they are not truly accessible for someone with ALS. Luckily, with the help of CCALS and their caregivers, Kate says they have managed to figure out how to live somewhat comfortably in the rooms they are given.

“ADA compliant doesn’t necessarily mean ALS-friendly,” she says. “We’ve had to call maintenance to remove bases from under beds that won’t allow a Hoyer lift to slide under. We've had to remove the doors from bathrooms because they weren’t quite wide enough to get a wheelchair in and out. Of the showers, only four are fully roll-in accessible. The others provide grab bars in a bathtub. For an ALS person getting in and out of the tub, the grab bars don’t really help. But CCALS provides shower chairs and benches, and that's super helpful in making it logistically possible.”

What the Retreat Means to the Women of Her ALS Story and Their Families

Despite these challenges, Kate says that it’s hard to do justice to how important this trip can be for her and the other women of Her ALS Story.

 “I'm not embarrassed by the way I talk or walk or eat my food or laugh or cry,” she says. “The other girls are willing to just be there with me. A lot of people in our situation are isolated and alone, so to be in person and feel normal for a few days instead of the odd man out that needs so many modifications, help, and assistance is a nice change.

The other side of that is our partners. From that first retreat in Madison, my husband also found the community and support of the partners to be beneficial in ways we never would have thought. So, for both of us to go and have five days together with another couple who get it. It's just amazing. I can't even put it into words.”

The Her ALS Story Retreat is open to active members of HAS. If you’re a woman diagnosed with ALS before the age of 35 and interested in learning more, visit https://heralsstory.org/.

What to Do Next: