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Ionis expands Surf Away+ event, marking 10 years of creating unique adaptive experiences for people with neurological diseases

via Business Wire

Ionis Pharmaceuticals, Inc. (Nasdaq: IONS) today celebrated 10 years of Surf Away+, an inclusive adaptive event for rare neurological disease communities. Originally created with the goal of providing people with spinal muscular atrophy (SMA) access to adaptive surfing, the event has expanded to include a myriad of adaptive experiences and will welcome additional communities impacted by neurological diseases, with more than 200 people from the Alexander disease (AxD), Amyotrophic Lateral Sclerosis (ALS), Angelman syndrome (AS) and SMA communities expected to attend this year’s event.

In partnership with the Challenged Athletes Foundation (CAF) and ADAPT Functional Movement Center, today’s event held at the beach in Oceanside, CA, will offer a broader range of activities designed for all abilities. Attendees of all ages will be able to participate in movement-based activities led by trained instructors, such as adaptive surfing, sitting volleyball and wheelchair pickleball. There will also be sensory-friendly experiences like painting, improv workshops, a tidepool tank, airbrush tattoos and kinetic sand tables. Additionally, resource booths offering tools, guidance and community support will be available for families and caregivers.

“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,” said Brett P. Monia, Ph.D., chief executive officer of Ionis. “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.”

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. Ionis' 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. Since 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.

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