Rare at Sea: Cruise offers connection, support for those with rare diseases

It had been a few years since Sean Baumstark, who is living with Friedreich’s ataxia (FA), came up with the idea of a cruise for people who, like him, have a rare disease.

It wasn’t easy, coordinating it all. And it wasn’t until everyone was finally aboard, meeting up on the deck, that Baumstark could exhale.

“We were just hanging out, taking selfies, laughing, listening to music, sharing stories, and staring at the ocean,” says Baumstark, who is cohost of Two Disabled Dudes. “It was in the midst of those moments that I realized that this is what it’s all about — being able to exist without having to explain, without having to feel uncomfortable or to feel like a burden. It’s about enjoying the company and the vacation vibes that come with a trip like this.”

The inaugural Rare at Sea cruise set sail on Feb. 26 — Rare Disease Day. Its destination may have been the Bahamas, but the ultimate goal was to give people who are affected by rare disorders, such as FA, a chance to connect in a supportive, fun, and relaxing environment.

Smooth sailing

The 80-member group, which included friends and family members, sailed together on Explorer of the Seas, as part of a regular Royal Caribbean cruise.

Group members traveled to Port Canaveral, near Orlando, Florida, “from all over,” says Baumstark, 44, who lives in Sacramento, California, and was diagnosed with FA in 2007.

Rare at Sea participants represented a range of rare diseases, including many with FA, such as Kiersten Riggs, 23, social growth manager for Bionews, which publishes Friedreich’s Ataxia News.

Kiersten Riggs set sail with her boyfriend TJ Goodman and (not shown) her parents.

“I like to travel, and I love being around people who know what I’m going through, who have the same struggles,” says Riggs, of Tulsa, Oklahoma, who was diagnosed with FA in 2018. “It’s just nice to be able to go at the same pace because we all need to go a little slower.”

Riggs, who was with her parents and her boyfriend, enjoyed movies on the pool deck, swimming, attending shows on the ship, and spending time with her new friends.

“We would text each other and find out where the other was,” she says. “One time, a few of us got together and talked for two hours. That was one of my favorite moments.”

Riggs says the entire trip was accessibility friendly, from “beach wheelchairs” in the Bahamas to ferry seats that folded to accommodate wheelchair users. Riggs brought a walker/wheelchair with her to help her navigate the ship — her first time using a mobility aid.

One of the main reasons that Baumstark chose a cruise for the event was because cruise ships generally offer extensive accommodations for people of varying abilities. They also have medical personnel on board.

“On a cruise, once you’re on board, there’s not a whole lot to worry about,” says Baumstark, whose mother accompanied him. “If you’re traveling on vacation to, say, Paris or Hawaii, you’ve got to figure out your Uber route or your taxi, or what time does that place open, and what time should we go. Little things like that add a layer of stress that I don’t need. And on a cruise, I don’t have to put up with it.”

All aboard

In 2023, Baumstark began mulling ways to engage the rare disease community beyond patient conferences. He explored ideas with community members, which led to a dinner discussion with Kyle Bryant, who has FA and cohosts the Two Disabled Dudes podcast, and Effie Parks, host of the Once Upon a Gene podcast and copresenter of Rare At Sea.

“At conferences, there’s a lot of science talk and a lot of education, which are both fantastic and necessary, but can also be kind of overwhelming,” Baumstark says. “We all agreed that the best part of those conferences is the after-hours gatherings and the random meet-ups in the lobby, where you can relax and have fun without an agenda. And I just threw out the idea: Why don’t we do a fun gathering, and what if it’s on a cruise?”

The idea for the Rare at Sea cruise was launched by Sean Baumstark, at left, shown with his mother, Elaine Baumstark.

Aboard the ship, the group had two official meet-ups. During one, members received T-shirts and swag bags containing trip souvenirs.

“On port stops, we knew a lot of people would do their own thing and connect with people naturally,” says Baumstark, who added that the destinations were accessible and easy to navigate.

If they weren’t enjoying the sunshine, warm temperatures, and turquoise waters, many group members attended shows and listened to live music. Some even hit the dance floor, Baumstark says.

“The idea is to vacation with people that get you, understand you, and understand the challenges that your disease brings without having to explain what those challenges might be,” says Baumstark, who is planning another Rare at Sea cruise, though there isn’t a set date. “When we hang out together, we’re no longer the minority, and we aren’t too concerned about feeling like outsiders.”

If you were on the Rare at Sea cruise, share your feedback with Sean Baumstark.