Drug company, patients bond riding the surf. ‘I just like to feel the wind in my face, too.’

Riley Sommerville, 13, knows what it’s like to go surfing, an activity that is generally impossible for kids with spinal muscular atrophy, a genetic condition that severely weakens muscle tone, requiring the use of a wheelchair on land.

But, for most of her life, Sommerville and a group of other kids and adults with SMA have been able to look forward to one day per year where an army of volunteers creates the exact environment necessary for them to feel that unique rush that only comes when gliding over water that’s crashing to shore.

“It’s very calming and exciting,” Riley said. “I just like to feel the wind in my face, too.”

On Friday, a team of volunteers carefully unbuckled the teen from her wheelchair, loading her onto a surfboard equipped with a special bath chair capable of holding her securely, then carried her like a queen on a royal litter into the surf far enough to float, but not so far to be in danger of big waves pounding overhead.

Surrounded by volunteers wearing orange rash guards and yard-wide smiles, she got many rides in a row just as others would on Friday morning and afternoon, as about 50 participants and their families took part in a range of augmented activities from pickleball to seated volleyball.

While events that cater to those with special needs have become increasingly common, this one is unique for its volunteers and the company that started hosting it back in 2015.

Most of the volunteers present for this event, and its previous incarnations over the last 10 years, work for Carlsbad’s Ionis Pharmaceuticals, a biotechnology company that has developed many drugs approved for the treatment of neurological disorders, including Spinraza, which became the first treatment for spinal muscular atrophy when the U.S. Food and Drug Administration approved the drug in 2016.

Riley and many who attended Friday’s event were quite literally being pushed through the waves by the researchers and other Ionis employees who make the drug she’s taking. And this year, the event, moved from La Jolla Shores in San Diego to an expanse of sand just north of the Oceanside Municipal Pier, was expanded to include participants with other rare neurological maladies, including Alexander disease, amyotrophic lateral sclerosis and Angelman syndrome, all conditions for which Ionis is pursuing treatments.

Originally called “Surf Away SMA” in reference to the fight to cure spinal muscular atrophy, the event was renamed Surf Away+ in recognition of the expanded cadre of participants and their families.

The growing event is the brainchild of 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 this particular post, the therapy dog was with a young boy with SMA.

“He was the first kid with SMA,” Moore recalled. “You know, as a scientist, you just see data, you don’t really connect with what the disease really means for real people.

“I remember just staring at that picture and being like, ‘these are the people we’re helping.”

The first event was quite small, with a handful of Ionis employees meeting with a handful of SMA parents to try to figure out a safe approach to gently riding waves. It was Riley’s dad, Derek, who came up with the idea of attaching a bath chair to a surfboard using some motorcycle straps that Moore had in his vehicle.

“It was terribly simple, but it was also quite something to do, because this is obviously a very delicate situation,” Moore said.

“It was a little experimental at first, but I love surfing, so, for me, it was like the highlight of the year,” Derek Sommerville said. “At first we didn’t really know what we were doing, but we just decided that, you know, we were going to find a way to make it work with bungee cords and duct tape and whatever was needed.”

JoAnna Sommerville, Riley’s mother, speaking through tears, emphasized the point that it has only been through the use of the drug that Ionis made that her daughter has been able to attend year after year for a decade.

“When I look back at the videos from before the shots were available compared to after, it’s really incredible,” Sommerville said. “She’s much stronger, and I’ve had friends and family who weren’t able to hear her very well before, but even her voice has gotten so much stronger.”

Brett Monia, Ionis’ chief executive officer, said the company intends to continue hosting and growing Surf Away far into the future. Management never has to ask for volunteers to staff the event, and the chance to get to know and form relationships with patients and their families has been of immeasurable value.

“Drug development is a tough business, fraught with failure and long timelines,” Monia said. “People work, you know, around the clock in laboratories or in manufacturing, and it’s hard sometimes to not lose sight of the big picture.

“Surf Away is extremely important to our culture. These types of events 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.”