Young patients and their families motivate U researcher to keep pushing for long, healthy futures for those with cystic fibrosis
Though she’s competitive, Terri Laguna, M.D., didn’t mind when one of her 12-year-old patients “smoked” her in a 5K race last year.
That’s because, despite having cystic fibrosis (CF), Tanner—who also plays hockey—is obviously thriving. And nothing could make Laguna happier. “He totally kicked our butts,” she laughs. “He was waving to us as we crossed the finish line.”
Laguna brings an athlete’s dedication, focus, and joy to her role as pediatric program director for the pioneering Minnesota Cystic Fibrosis Center. A softball shortstop and avid bicyclist, she traces her dedication to her own childhood health crises—Laguna nearly died after a particularly severe asthma attack landed her in intensive care at age 9—and finds her dedication constantly reinforced by the kids and families with whom she works.
“CF means medications every single day, multiple times a day, from the day you’re born,” Laguna says. “There’s no wiggle room. It’s such a time-consuming chronic disease.”
But thanks in part to groundbreaking research taking place at the Minnesota Cystic Fibrosis Center, the picture is getting brighter all the time.
“It used to be just a pediatric disease. That’s not the case anymore; we have 65-year-old grandmothers with CF here,” Laguna says. “I tell all our new families, ‘Your child is going to have a long and healthy life; it’s our job to help ensure that happens. It’s not going to be easy; you’re going to do medication and therapy every day. The investment you’re going to put into this is going to be huge.’ But there’s a lot of hope in the CF community now.”
Much of that hope comes from research, including clinical trials for the new drug Kalydeco, which has been approved for kids under age 6 with one specific CF mutation. The University is one of several sites for the trial.
Laguna relishes promoting the philanthropy that makes such trials possible. A recent benefit, the Votel Family Mid-Winter Gala—at which family and friends of 20-something Chelsea Votel gathered to learn and give—reminded Laguna how crucial fundraising is to her work.
“These events make you realize why you do what you do. It’s very powerful,” Laguna says. Votel is healthy: “She climbs mountains, she runs. A couple decades ago this wouldn’t have been possible … She never takes for granted the fact that she can breathe.”
One of Laguna’s own research interests is the search for a biomarker that could help doctors assess lung health in CF patients under age 6, who are too young to take a pulmonary function test. She’s finding evidence to suggest that the molecule desmosine, which helps hold the elastin of the lungs together, might provide valuable clues about the youngest CF patients—“who is going to be sicker, who we can treat earlier”—to help mitigate potential lung injury.
Laguna believes the time is near when children with CF “don’t have to think about this disease, don’t have to have it define who they are. It’s a very exciting time.”