Madison Reporter

Easton King, a 19-year-old student at the University of Wisconsin-La Crosse, has been able to pursue his goal of attending college and maintaining independence thanks to advances in treatments for spinal muscular atrophy (SMA). Diagnosed with SMA as an infant, King has used an electric wheelchair since he was two years old. His determination led him to earn his driver’s license using an adapted vehicle.

SMA is a rare genetic condition that causes loss of lower motor neurons early in life. There is no cure for SMA, but recent therapies have improved quality of life for patients. In 2016, the FDA approved nusinersen (Spinraza), which helps preserve neurons controlling muscle function through regular intrathecal administration. A daily oral medication, risdiplam (Evrysdi), became available in 2020 for those over age two.

King began receiving nusinersen at age 11 and later switched to risdiplam during the COVID-19 pandemic, reducing the need for frequent travel to Madison for treatment. However, this change brought new challenges regarding delivery logistics and insurance coverage.

In 2023, clinical trial leaders at the University of Wisconsin partnered with Novartis on a Phase 3 trial of onasemnogene abeparvovec (Zolgensma) gene therapy for adults. Previously only available to infants due to safety considerations related to dosage and delivery method, Zolgensma targets the underlying genetic cause by replacing a non-working form of the SMN1 gene.

Dr. Jennifer Kwon, pediatric neurologist at UW Health Kids and professor at University of Wisconsin School of Medicine and Public Health, identified King as a candidate for this trial: “For older patients like Easton, there were no other options beyond Spinraza until Evrysdi came along,” she said. “Both these treatments are chronic, for the lifetime of a patient.”

Laurie King described her son’s experience: “He was in the second group of the kids who got it at UW, but only one of eight kids in the world in his age range,” she said. “We are grateful for UW Health being on top of the latest treatments.”

King received Zolgensma via lumbar puncture under Dr. Kwon’s supervision at American Family Children’s Hospital and experienced no adverse side effects during observation following administration.

“I wanted to see if it worked for me, and I wanted to show others that it was safe and help advance care for other people with SMA in the future,” Easton King said.

Two years after participating in the trial, King reports stable muscle function without ongoing treatment or side effects. He continues his studies at UW-La Crosse where he manages the men’s basketball team while pursuing sports management.

August marks SMA Awareness Month; both Easton and Laurie hope their story will raise awareness about living with SMA and encourage families facing similar diagnoses.

“I didn’t let it affect how I want to live my life — I'm going to college, and I have high goals in life with a career,” Easton said. “I never thought it would be possible because of my disease.”

“To parents who have a child with SMA or any condition, finding the community of people is so vital,” Laurie added. “To be able to talk to people has been so helpful.”