Ionis Pharmaceuticals, Inc. marked a major milestone today, celebrating the 10th anniversary of Surf Away+, its signature adaptive community event. What began as an initiative to provide people with spinal muscular atrophy (SMA) access to adaptive surfing has evolved into a broader program that welcomes participants from multiple rare neurological disease communities.
This year’s celebration, held at Oceanside Beach in California, was the largest yet. More than 200 participants and their families were expected, representing communities affected by Alexander disease (AxD), amyotrophic lateral sclerosis (ALS), Angelman syndrome (AS), and SMA. The expanded focus reflects Ionis’ commitment to fostering inclusivity and creating memorable experiences for people impacted by neurological conditions.
A Decade of Impact
Surf Away+ was launched a decade ago with the simple idea of breaking barriers. For people with SMA, one of the greatest challenges is access to recreational opportunities. Adaptive surfing provided both an empowering physical activity and a chance to connect with others who share similar experiences. Over the years, the program grew in scope and ambition, now offering a variety of adaptive and sensory-friendly activities that accommodate a wide range of abilities and ages.
“Surf Away+ is about more than surfing—it’s about creating joy, building community, and providing experiences that families can share together,” said Brett P. Monia, Ph.D., chief executive officer of Ionis. “At Ionis we are committed to enabling better futures for people with serious diseases through our innovative medicines and through programs like Surf Away+, which enrich the lives of people touched by neurological disease.”
Expanding Activities for All Abilities
This year’s event was held in partnership with the Challenged Athletes Foundation (CAF) and ADAPT Functional Movement Center, two organizations with long-standing expertise in inclusive sports and physical activity. Their collaboration ensured that participants could safely and confidently take part in a variety of adaptive and recreational experiences.
Movement-based activities included adaptive surfing, sitting volleyball, and wheelchair pickleball—each designed with modifications that allow for full participation. For those seeking a different kind of engagement, sensory-friendly experiences were available, such as painting, improv workshops, tidepool tanks, airbrush tattoos, and kinetic sand tables.
Resource booths lined the event, offering families and caregivers practical tools, guidance, and access to supportive networks. Together, these activities created a festival-like atmosphere of connection, fun, and discovery.
Powered by Volunteers
A hallmark of Surf Away+ is the strong volunteer presence from within Ionis itself. Each year, more than 100 Ionis employees dedicate their time to ensuring the event runs smoothly and participants have a memorable experience. From setting up adaptive equipment to assisting with activities, the volunteers bring energy, enthusiasm, and compassion to the day.
“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,” Monia added. “It’s about connection, celebration, and simply having fun.”
Looking Ahead
As Surf Away+ enters its second decade, Ionis plans to continue expanding the event to reach more communities living with neurological disease. The success of the program demonstrates the power of combining corporate responsibility with genuine community engagement.
By offering inclusive experiences that go beyond medicine, Ionis reinforces its mission to improve lives not only through groundbreaking therapies but also through opportunities for joy, empowerment, and human connection.
About Surf Away+
Originally created in 2015, Surf Away+ (previously known as Surf Away SMA) is an annual, community-centered adaptive event for families, caregivers and individuals affected by neurological diseases. The event features activities designed for people of all abilities, ranging from adaptive surfing and wheelchair pickleball to painting classes and sandcastle building. Surf Away+ is Ionis’ largest volunteer program, with more than 100 employees volunteering to support the event throughout the day.
About Ionis Neurology
Ionis has been at the forefront of discovering and developing leading neurological disease medicines, including SPINRAZA® (nusinersen), the first approved treatment for spinal muscular atrophy, WAINUA® (eplontersen), a medicine to treat hereditary transthyretin-mediated amyloid polyneuropathy (ATTRv-PN), and QALSODY® (tofersen) for SOD1-ALS. The clinical-stage portfolio includes 13 investigational medicines, of which eight are wholly owned by Ionis.
onis’ investigational portfolio includes medicines for which there are few or no disease modifying treatments, such as rare diseases including Angelman syndrome, prion disease, multiple system atrophy, Huntington’s disease and Alexander disease, as well as more common conditions such as Alzheimer’s.
About Ionis Pharmaceuticals, Inc.
For three decades, Ionis has invented medicines that bring better futures to people with serious diseases. Ionis currently has marketed medicines and a leading pipeline in neurology, cardiometabolic disease and select areas of high patient need. As the pioneer in RNA-targeted medicines, Ionis continues to drive innovation in RNA therapies in addition to advancing new approaches in gene editing.
A deep understanding of disease biology and industry-leading technology propels our work, coupled with a passion and urgency to deliver life-changing advances for patients. To learn more about Ionis, visit Ionis.com and follow us on X (Twitter), LinkedIn and Instagram.
About ADAPT Functional Movement Center
Adapt Functional Movement Center is a nonprofit neurological rehabilitation and recovery center located in Carlsbad, California. The center’s integrative recovery programs encompass physical wellness, mental health, community development, patient education, enablement, and advocacy for individuals impacted by chronic neurological diseases and injuries, including multiple sclerosis, ALS, spinal cord injury, traumatic Brain injury, and cerebral palsy. Adapt has supported over 1,000 unique clients from over 20 different countries. Learn more at www.adaptmovement.org.
About Challenged Athletes Foundation
The Challenged Athletes Foundation® (CAF) stands as a global leader in empowering individuals with physical disabilities to embrace vibrant, active lives. CAF firmly believes that engaging in physical activity fosters self-esteem, encourages independence, and enriches the quality of life. CAF has been at the forefront of the adaptive sports movement for more than three transformative decades, catalyzing change and redefining possibilities. S
ince its inception in 1994, CAF has raised over $191 million and fulfilled 52,000+ funding requests from people with physical disabilities across all 50 states and more than 70 countries, impacting another 60,000 individuals annually through its outreach efforts. From providing essential equipment like handcycles to offering mentorship and encouragement, CAF’s mission is clear: to provide opportunities and support to those who aspire to lead active, athletic lifestyles. To learn more, please visit www.challengedathletes.org.
Ionis Pharmaceuticals® is a trademark of Ionis Pharmaceuticals, Inc. SPINRAZA® and QALSODY® are registered trademarks of Biogen. WAINUA® is a registered trademark of the AstraZeneca group of companies.
