Restoring Home and Heart: Ionis Provides Much-Needed Construction for Patient Family

February 28, 2019

A decade ago, you’d likely find Taylor Jensen working on the waters of the San Diego Bay, where she trained dolphins and sea lions for the US Navy’s Marine Mammal Program. She was the picture of strength—but after giving birth, that began to change.  

Initially, she thought “maybe this is just what motherhood does to you.” But when friends noticed she had a limp, she called a doctor. Taylor was diagnosed with myotonic dystrophy (DM), a rare and debilitating muscle disease that is passed genetically. Further testing confirmed that her infant son, River, also had inherited DM.  

“That was the worst day of my life,” she recalls. “My husband and I fell into a really dark place.”

But today, seven years later, they have emerged as champions for DM awareness. As a patient and caregiver, Taylor has especially immersed herself into the mission, which gets harder as the progressive disease takes a bigger toll. Even getting around her home had become increasingly difficult, that is, until staff at Ionis Pharmaceuticals recently helped to complete a remodel with much-needed modifications.

“Taylor inspires us to look beyond science and focus on the people who depend on our work,” said Kristina Bowyer, Executive Director of Patient Advocacy for Ionis Pharmaceuticals, where Taylor has been a part of research for a DM treatment. The company is an innovator in targeting ribonucleic acid (RNA), which is basically an instruction manual for the body. If Ionis could create a drug that manipulates RNA, it could control the disease—and patients like Taylor are critical part of the solution.

“Taylor and her family have given so much that we felt it was our turn to help however we could,” Kristina explained.

Not only did Ionis staff raise $15,000 for the work—they rolled up their sleeves and did it themselves. Staff did things like adding wheelchair ramps, widening entryways and lowering shelves.

“We had the head of clinical development hammering nails and people from finance sawing boards—it was a true team effort,” Kristina added. “You can read about diseases in a book, but you don’t really understand it until you look a patient in her eyes or see firsthand the impact it’s had on her life.”

This patient-focused philosophy is central to how Ionis approaches its medicine, Kristina adds—and it speaks to the company’s bigger corporate culture. Every year Ionis finds a way to give back. Employees have done everything from picking up trash to support I Love a Clean San Diego and participating in events for Rare Disease Day, a global effort that aims to give patients a voice—which is celebrated on Feb. 28 every year.

In Carlsbad, Ionis is part of a booming life sciences industry that employs more than 5,400 people at over 75 companies. With nearly 2,000 patents issued to life science companies in Carlsbad over the past 10 years, it is easy to focus on the innovation that is being produced. But in her role, Kristina works to keep Ionis focused on the reason for the research: patients.

“At the end of the day, we’re all doing this because sick people are depending on us,” she said. “Our work has the power to change lives—not just through medicine, but through the relationships we build with patients and their families.”

Indeed. Beyond restoring Taylor’s home, this experience has restored her joy. It has allowed her to focus on helping her son enjoy all the things a little boy should—like riding bikes and climbing trees—realizing that one day he may not be able to do so.

“The future is the scariest part of this disease. There are so many unknowns.  I don’t know what the future holds for me and my son,” Taylor says. “But in the end, I just have to focus on hope. This has renewed my hope. It has given me strength to keep going. And I’m forever grateful for everyone at Ionis for that.”