Sarepta Therapeutics Announces Recipients of Inaugural LGMD Grant Awards; Program Supports Innovative Efforts to Shorten the Diagnostic Journey
10/26/22 9:00 AM EDT
– Recipients awarded a total of $100,000 in grants
– Grants will support education and activities in four countries
CAMBRIDGE, Mass., October 26, 2022 -- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today announced it awarded $100,000 to four patient advocacy organizations through the inaugural LGMD Grant Award Program. Limb-girdle muscular dystrophy (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 LGMD Grant Award program 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, increased clinical trial participation and improved access to potential future treatments.
“On behalf of Sarepta, I am thrilled to announce the recipients of the inaugural LGMD Grant Awards. This program grew out of a community-identified need to address the slow and often frustrating path to diagnosis, and the many proposals we received respond to this need,” said Diane Berry, Sarepta’s Senior Vice President of Global Health Policy, Government and Patient Affairs. “The four recipient organizations impressed us with their creative and constructive approaches to address the challenges facing the LGMD community on the genetic testing journey. We are excited to support these efforts to accelerate LGMD diagnosis and open up new possibilities for obtaining earlier care and support in are-as of the world where there is great need.”
The competitive grant program was open to non-governmental and patient advocacy organizations from across the globe. The following recipient organizations highlight the global prevalence and uni-versal need for increased awareness, testing and resources.
- Cure Congenital Muscular Dystrophy (CMD), a U.S.-based organization, will use the grant to raise awareness of LGMD symptoms and the value of genetic testing through general and tar-geted outreach to undiagnosed individuals in a large patient registry whose symptoms align with established LGMD symptoms.
- The Indian Association of Muscular Dystrophy will use the grant to increase genetic testing rates via a broad program that will include physician education and support for under-resourced patients. The grant also will advance the effort to build a national LGMD patient database.
- Muscular Dystrophy Canada will use the grant to expand navigation programs that aid the LGMD community in accessing both clinical trials and resources to support the best quality of life. The funding also will help educate key stakeholders on the advancement of potential new LGMD therapies.
- The Muscular Dystrophy Foundation of South Africa will use the grant to raise awareness of LGMD symptoms and empower identified LGMD patients to undergo genetic testing for genetic confirmation.
“We want to thank all of the organizations that submitted proposals. The breadth and number of applications underscored the opportunities to improve the diagnostic journey,” Berry said. “We hope the process of brainstorming solutions to this challenge unites us all in acknowledging the need for expanded genetic testing across the world.”
All proposals were reviewed by the Sarepta Grants Committee. Organizations will have through 2023 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 Twitter, LinkedIn, Instagram and Facebook.Internet Posting of Information
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Source: Sarepta Therapeutics, Inc.
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