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Sarepta Therapeutics Announces Call for Applications for the 2024 LGMD Grant Award Program
03/19/24 9:00 AM EDT
– Up to $100,000 in total funds to be awarded to select patient advocacy and non-governmental organizations
Applications will be accepted until July 19, 2024
Sarepta invites proposals that address one or more of the following areas: promoting recognition of early signs and symptoms of the LGMDs; enhancing participation in genetic testing and genetic counseling programs; and empowering families to take an active role in pursuing a confirmed diagnosis to learn their subtype. The number of awardees will be determined by the selection committee to optimize the available funds.
LGMDs represent 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. There are more than 30 LGMD subtypes, each with a unique underlying genetic cause and wide variance in their severity. Given the complexity of the LGMDs, genetic testing plays a critical role in accurately diagnosing a person’s subtype. Sarepta’s portfolio of investigational gene therapies for LGMD offers the potential to address six LGMD subtypes, which together represent more than 70 percent of all known LGMDs.
“Through the LGMD Grant Award Program, we aim to help improve the diagnostic journey for people living with LGMD and empower patients with deeper knowledge of their disease,” said Diane Berry, Ph.D., Sarepta’s Executive Vice President and Chief Global Policy and Advocacy Officer. “For LGMD patients, genetic confirmation may allow an individual to access specialized care earlier, participate in future clinical trials and access potential future treatments. We look forward to receiving and reviewing proposals for this important program.”
Applications must be submitted with appropriate documentation of non-profit or non-governmental organization status. Proposals should describe activities that aim to shorten the LGMD diagnostic journey and/or enhance participation in existing genetic testing programs. Organizations will have up to one year to complete the activities described in their proposal. Efforts outlined in the proposal should not be subtype specific. The program is open to organizations regardless of geography and Sarepta’s Grants Committee will evaluate each proposal’s rationale, creativity, inspirational value, and how the program’s success will be measured. Members of the LGMD community may apply if they are aligned with an organization to support their submission. Applications will be accepted until Friday, July 19, 2024. Applicants will be notified of grant committee decisions by September 30, 2024. For more information or to apply please visit https://www.sarepta.com/lgmd-grant-award-program.
About
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.
Source: Sarepta Therapeutics, Inc.
Investor Contact:
iestepan@sarepta.com
Media Contacts:
tsorrentino@sarepta.com
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