Taking the Plunge for “The Long Cutie” & All Those with LQTS

On Saturday, July 17, 2021 inspired by the story of Dave Hutton and his four-year old daughter, Isla, “The Long Cutie,” a team of former Indiana University Swim Team members - Taylor Truex, Samantha Lisy, Mackenzie Atencio, Rachel Matsumura, Shelby Koontz and Levi Brock - are taking the plunge and competing in the Trans Tahoe Relay race. Created in 1976, the Trans Tahoe Relay is one of the largest organized, open water swimming events in the world, promoting, according to its website, “a team-spirited competition between swimming clubs and other groups and organizations.”

Each year, the Olympic Club of San Francisco hosts the event, a 10-mile race from the Nevada side of Lake Tahoe to the California side. The event draws former Olympians, competitive masters swimmers and collegiate teammates to tackle the challenge, with team members taking turns swimming for 30 minutes, then rotating every 10 minutes until reaching the finish line (when one member of the team is in the water, the others follow along on boat).

This year, we’re keeping a keen eye on those former IU swimmers, who’ve dubbed themselves “The Long Cuties,” as they are using the event to raise awareness of Long QT Syndrome and the need for research into advanced treatments, as well as raise funds for Isla and her family - be sure to visit their GoFundMe page here.

Recently, we visited with The Long Cuties swimmers to get insights into the training the team members are going through, their motivation, and their expectations for the race. 

How did you first become aware of Trans Tahoe Relay, and how did your team come together for this year’s race?

Rachel Matsumura: A couple of us are from the Reno-Tahoe area, and had heard of the race, but never found the right time until now. The few of us from here have some former Northern Nevada teammates that have competed in the race before, so we thought it would be fun to bring our IU friends to Tahoe and show them around! 

We all swam at Indiana University together and have been great friends ever since. We have been wanting to do this for a few years now, and thought it would be a great way to have a fun reunion and reignite our love for the sport of swimming. We are so excited to be raising awareness of Long QT Syndrome with our Northern Nevada community!

How does an open water swim differ from a pool swim?

Sam Lisy: An open water swim is much different than a pool swim! It can be both more refreshing and more challenging. In a pool, you have designated lanes which are separated by lane lines, controlled water and air conditions, and a designated distance with walls. There is much less control in an open water race for all of the aforementioned things. Of note for the water conditions - there are waves, currents, and in Tahoe specifically, very cold temperatures! Also, because there aren’t lanes or walls, swimmers have to pick their heads up and spot where they’re going, which causes disruptions to the stroke rhythm. While the lack of predictability may provide a challenge, open water allows swimmers to soak up sun, experience exciting new locations, and break up the monotony of endless laps in a pool.

When did you get serious about training for the event, and what kind of regimen are you and your teammates going through to get in condition to compete?

Shelby Koontz: We decided to become serious about this event once we found out that this race was still happening since they cancelled last year’s event due to the COVID-19 pandemic. Once our entry was accepted and our fundraising for Isla began a month ago, we then started to train a couple days a week in the water. Some of us have been out of the water for a couple of years, so we got back in the water to let our bodies get used to swimming again. A lot of us have been doing a lot of out of water cardio training and long distance swims to get our bodies in shape for the 10-mile swim.

What are your goals for this year’s race?

Levi Brock: Our primary goal for this year’s race is to raise awareness of a treatable but fatal condition called Long QT Syndrome. As we planned, we got to know a girl, Isla, afflicted with LQTS, and her father. Currently we are trying to raise enough money for Isla and her family to go on a vacation that she can handle with her condition.

Initially we were looking for a reason to all get together as a group and do something fun. As a group of former swimmers, an aquatic race was the obvious choice. We’ve been out of the water for nearly four years now, so we are just hoping to finish the race in the allotted time and have some fun in the beautiful scenery of Lake Tahoe.

Your team has been inspired by Isla, the “Long Cutie.” How did you find out about Isla, and what messages do you want to send to her and her father, Dave?

Taylor Truex: Through Thryv Therapeutics’ Patient Story (previously LQT Therapeutics) on Isla and her father, Dave, I became aware of the blog Dave had started from the beginning of Isla’s and his journey with LQTS. Seeing his frequent updates on social media, I saw how much impact Isla and Dave have had on their followers, and I knew they were going to be a family we wanted to do something special for.

This is Isla, The Long Cutie

Isla and Dave, thank you for being our inspiration: 1) to get back in the water and back together as teammates, but more importantly 2) thank you for letting us take your story to spread awareness through our communities!

What messages do you want to send out to the larger LQTS community?

Mackenzie Atencio: Our hope is that the larger LQTS community would feel supported and visible through our efforts. This particular fundraiser may be about one little girl, but Isla is just a representative of all those who live with this disease. We want the world to know more about it to not only support those it affects, but to come together with our finances, our intellectual abilities, and our emotional support to give each person living with LQTS the opportunity to live with the highest quality of life possible.