Sarepta Therapeutics Launches Inaugural LGMD Grant Award Program
05/05/22 9:30 AM EDT
- Program website is now open and accepting applications through September 5, 2022
- Up to $100,000 in total funds to be awarded to selected patient advocacy and non-governmental organizations
CAMBRIDGE, Mass., May 5, 2022 (GLOBE NEWSWIRE) -- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today announced the launch of the limb-girdle muscular dystrophy (LGMD) Grant Award Program, created with the goal of shortening the LGMD diagnostic journey and enhancing participation in existing genetic testing programs. The program will award funds to patient advocacy and non-governmental organizations to support their proposed initiatives. The Company is seeking proposals addressing one or more of the following areas: promoting recognition of early signs and symptoms of LGMD; enhancing participation in genetic testing and genetic counseling programs; and empowering families to take an active role in pursuing a confirmed diagnosis. Sarepta will grant up to $100,000 in total funds to be awarded to one or more projects, and 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. Many LGMD sub-types are significantly life-limiting and often life-ending diseases. Sarepta’s portfolio of investigational gene therapies for LGMD offers the potential to address six LGMD subtypes, which together represent more than 70% of all known LGMDs.
“The LGMD Grant Awards Program is a new program that grew out of insights shared by the LGMD community and aims to help address what is often described as a frustrating and convoluted path to a diagnosis. Many people living with LGMD have not been offered genetic testing, need updated genetic testing, or are assigned a diagnosis based on their symptoms,” said Diane Berry, Sarepta’s Senior Vice President of Global Health Policy, Government and Patient Affairs. “Through this grant program, we aim to enable better support for families over time, including earlier access to specialized care, increased clinical trial participation, and improved access to potential future treatments for the LGMD community. Additionally, this program will foster increased engagement between individuals living with LGMD and patient advocacy and non-governmental organizations as they work creatively together to address some of the inherent challenges presented by this group of diseases. 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 impact the LGMD community at a regional or global level and 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 Monday, September 5, 2022, at 11:59 p.m. PDT. Applicants will be notified of grant committee decisions before September 30, 2022. For more information or to apply please visit www.sarepta.com/LGMDGrantAwardProgram.
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.
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Source: Sarepta Therapeutics, Inc.
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