A Unique Experience for Those with Spinal Muscular Atrophy
Riley Sommerville, a 13-year-old girl from California, has experienced the thrill of surfing, an activity that many children with spinal muscular atrophy (SMA) are not able to enjoy. SMA is a genetic condition that severely weakens muscle tone and often requires the use of a wheelchair. Despite these challenges, Riley and other individuals with SMA have had the opportunity to experience the joy of surfing once a year thanks to a special event organized by volunteers.
Every year, a group of dedicated volunteers creates a safe and supportive environment where children and adults with SMA can experience the unique feeling of gliding over water as it crashes against the shore. For Riley, this event is more than just a day out—it’s a moment of calm and excitement that she looks forward to all year.
On a recent Friday, Riley was carefully lifted from her wheelchair and placed onto a surfboard equipped with a special bath chair designed to hold her securely. Volunteers carried her like a queen into the ocean, ensuring she was far enough out to feel the waves but not in danger of being overwhelmed by large swells. Surrounded by volunteers wearing orange rash guards and wide smiles, Riley enjoyed multiple rides on the water, much like others who participated in the event.
The event included a variety of activities beyond surfing, such as pickleball and seated volleyball, allowing participants and their families to engage in fun and inclusive experiences. While events tailored for people with special needs have become more common, this one stands out due to its unique volunteer base and the company that started hosting it in 2015.
Most of the volunteers at the event, as well as those who have participated in previous years, work for Ionis Pharmaceuticals, a biotechnology company based in Carlsbad. Ionis has developed several drugs approved for treating neurological disorders, including Spinraza, the first treatment for SMA approved by the U.S. Food and Drug Administration in 2016.
For many participants, including Riley, the event is a way to connect with the researchers and employees who develop the medications they rely on. This year, the event was moved to a new location near the Oceanside Municipal Pier and expanded to include individuals with other rare neurological conditions, such as Alexander disease, amyotrophic lateral sclerosis, and Angelman syndrome. These conditions are also being researched by Ionis.
Originally called “Surf Away SMA,” the event was renamed “Surf Away+” to reflect the broader range of participants and their families. The idea for the event came from Max Moore, Ionis’ vice president of manufacturing operations. An experienced surfer, Moore saw an online post about Ricochet, a local canine celebrity known for encouraging people with disabilities to surf. In the post, Ricochet was with a young boy with SMA.
Moore recalled how the image of the boy sparked a realization about the real impact of his work. “As a scientist, you just see data, you don’t really connect with what the disease really means for real people,” he said. “I remember staring at that picture and thinking, ‘these are the people we’re helping.’”
The first event was small, with a few Ionis employees meeting with a few SMA parents to figure out a safe way to help kids ride the waves. It was Riley’s father, Derek, who suggested using motorcycle straps to attach a bath chair to a surfboard. The setup was simple but effective, and it became a highlight of the year for many involved.
JoAnna Sommerville, Riley’s mother, emphasized how the drug developed by Ionis has made it possible for Riley to attend the event year after year. She shared how watching videos from before and after the treatment showed significant improvements in Riley’s strength and voice.
Brett Monia, CEO of Ionis, expressed the company’s commitment to continuing and expanding the Surf Away event. He noted that volunteers are always eager to participate, and the opportunity to build relationships with patients and their families is invaluable. Monia highlighted the importance of such events in maintaining focus and motivation in the challenging field of drug development.
“Drug development is a tough business, fraught with failure and long timelines,” Monia said. “Events like Surf Away are crucial to help people deal with those long timelines and absorb those failures. It really helps illustrate why we wake up in the morning and go to work.”