Surf Away+ event brings fun in the sun to people with rare diseases
Ionis' annual program offers a day of beachside adaptive sports
Ionis Pharmaceuticals recently celebrated the 10th anniversary of its Surf Away+ program, a day of adaptive sports and beach fun that has welcomed people with amyotrophic lateral sclerosis (ALS) alongside those with other neurological diseases.
Held Sept. 12 at the beach in Oceanside, California, the event brought together more than 200 participants from the ALS, Alexander disease, Angelman syndrome, and spinal muscular atrophy (SMA) communities for a day of recreation and connection.
In collaboration with the Challenged Athletes Foundation and the Adapt Functional Movement Center, the event included adaptive surfing, sitting volleyball, and wheelchair pickleball, along with sensory-friendly options such as painting, improv workshops, a tidepool tank, and airbrush tattoos.
Families and caregivers were also offered community support through resource booths that provided tools, guidance, and information tailored to their needs, and opportunities to connect with others in similar situations.
“At Ionis, we are committed to enabling better futures for people with serious diseases through our core work advancing innovative medicines — as well as through signature community programs like Surf Away+, which enriches the lives of people touched by neurological disease,” Brett P. Monia, PhD, CEO of Ionis, said in a company press release.
How the program has grown
The initiative was launched in 2015 as Surf Away SMA, focused on people with SMA, a rare genetic disorder marked by progressive muscle weakness and wasting. Over time, the program has grown to serve a broader range of neurological disease communities, including those affected by ALS.
ALS is a progressive neurodegenerative disease that damages the nerve cells controlling voluntary movement. Ionis played a key role in developing Qalsody (tofersen), the first treatment targeting a genetic form of ALS associated with SOD1 mutations, which is now marketed by Biogen.
The company also helped develop Spinraza (nusinersen), the first approved therapy for SMA, and is actively advancing treatments for other rare neurological diseases, including Angelman syndrome and Alexander disease.
Surf Away+ is Ionis’ largest volunteer initiative, with more than 100 employees contributing to this year’s event.
“We’re so proud of the over 100 Ionis volunteers who come together each year to ensure Surf Away+ creates a memorable event for children and adults with serious diseases to connect with others, celebrate new experiences, and have fun,” Monia said.
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