Press Release

- Recipients awarded a total of more than $100,000 in grants

- Funding will support education and activities to shorten diagnostic journey

CAMBRIDGE, Mass., Sept. 30, 2024-- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today announced it awarded more than $100,000 in grant funding through the Limb-girdle muscular dystrophy (LGMD) Grant Award Program. LGMD represents a group of distinct genetic neuromuscular diseases with a generally common set of symptoms, including progressive, debilitating weakness and wasting that begins in muscles around the hips and shoulders before progressing to muscles in the arms and legs.

The grant program launched in 2022 and was created with the goal of shortening the LGMD diagnostic journey and enhancing participation in existing genetic testing programs so that families may benefit from earlier access to specialized care and increased clinical trial participation.

“Sarepta is excited to continue supporting organizations that align with our efforts to identify and address challenges facing the LGMD community as research suggests that less than a third of patients have a genetic diagnosis,” said Diane Berry, Ph.D., Sarepta’s Executive Vice President, Chief Global Policy and Advocacy Officer. “Our review committee was impressed by the diverse and thoughtful proposals, and we are thrilled to support the grant recipients as they work to increase awareness, testing, and resources and help offer long-term impact in areas of the world where it is greatly needed.”

The grant program was open to non-governmental and patient advocacy organizations from any country or region. The following organizations are this year’s recipients:

• Asociación Distrofia Muscular, based in Argentina, was founded in 1983 by individuals with neuromuscular disorders, their families, and healthcare professionals who specialized in these pathologies. The organization will use the grant to reach more patients in Argentina and Latin America and provide counseling and medical assistance and promote genetic testing.
• GFB Onlus, based in Italy, is dedicated to supporting and promoting research projects to treat LGMD and advance the needs of patients and their families. The organization will use the grant to build a network of educational groups for families in their local language, provide genetic testing education, and study the early signs and symptoms for people with a confirmed diagnosis.

All proposals were reviewed by the Sarepta Grants Committee. Organizations will have through 2025 to complete the activities described in their proposal. For more information about the program, visit www.sarepta.com/LGMDGrantAwardProgram or send an email to Advocacy@Sarepta.com.

About Sarepta Therapeutics

Sarepta is on an urgent mission: engineer precision genetic medicine for rare diseases that devastate lives and cut futures short. We hold leadership positions in Duchenne muscular dystrophy (DMD) and limb-girdle muscular dystrophies (LGMDs), and we currently have more than 40 programs in various stages of development. Our vast pipeline is driven by our multi-platform Precision Genetic Medicine Engine in gene therapy, RNA and gene editing. For more information, please visit www.sarepta.com or follow us on LinkedIn, X (formerly Twitter), Instagram and Facebook.

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Source: Sarepta Therapeutics, Inc.

Investor Contact:
Ian Estepan, 617-274-4052
iestepan@sarepta.com

Media Contact:
Tracy Sorrentino, 617-301-8566
tsorrentino@sarepta.com