LGMD 2024 Grant Program

The path to a diagnosis of limb-girdle muscular dystrophy (LGMD) is often long and can involve multiple years of frustrating experiences. Many people living with LGMD are assigned a diagnosis of LGMD based on their symptoms, have not been offered genetic testing, or have a need for updated genetic testing. 

Sarepta is introducing this LGMD Grant Award Program, an effort aimed to shorten the LGMD diagnostic journey and/or enhance participation in existing genetic testing programs. The goal of our efforts is to ultimately offer long-term impact for families, such as earlier access to specialized care, increased clinical trial participation, and improving access to potential future treatments for the LGMD community. The LGMD Grant Award Program is global in nature, and Patient Advocacy Organizations or non-governmental organizations from any country are welcome to apply.

Sarepta will grant monetary awards so that patient advocacy organizations or non-governmental organizations may implement their proposals. If you are a member of the LGMD community and have a great idea, please partner with a patient advocacy organization to submit an application! Up to $100,000 United States Dollars (USD) will be awarded, and the number of awardees will be determined by the selection committee to optimize the available funds.

Applications may be submitted between March 19, 2024 and July 19, 2024. The application window will close at 11:59 p.m. PDT. 

This website page is intended for U.S. audiences.

Program Overview

Applications addressing the following areas will be considered:

This grant program is seeking applications that support earlier LGMD diagnosis and/or increased participation in established genetic testing programs. Proposals must be original, meaningful, and should include ways to address one or more of the following areas:

  1. Promoting recognition of early signs and symptoms of LGMD.
  2. Enhancing participation in genetic testing and genetic counseling programs.
  3. Empowering families to take an active role in pursuing a confirmed diagnosis to learn their subtype.

This grant program is designed to award patient advocacy organizations and non-governmental organizations with funds to support their proposed initiatives. We hope that individuals who are inspired with an idea will choose a non-profit partner. If you need help choosing a partner, please reach out to [email protected] to brainstorm. Similarly, we hope that non-profit organizations will challenge members of your community to come up with an idea and partner with you to make an impact in your region!

These and other criteria will be evaluated by the grants committee:

  • Application must be submitted between March 19, 2024 and July 19, 2024.
  • Applications must be submitted with appropriate documentation of non-profit or non-governmental organization status.
  • Applications must describe activities that aim to shorten the LGMD diagnostic journey and/or enhance participation in existing genetic testing programs.
  • Activities described in the proposal should be completed within one year.
  • Applications must describe efforts that impact the LGMD community at a regional or global level. Efforts should not be subtype specific.
  • The Sarepta Grants Committee will evaluate the proposal’s rationale, creativity, inspirational value, and how the program’s success will be measured.

*Additional criteria will apply, please see FAQ for more detail

Helpful Links:

  1. Review the LGMD grant award program FAQ Document before submitting (available in English, French, and Spanish).
  2. Reach out to [email protected] with any further questions after reviewing the FAQ document. We thank you for your interest and are happy to connect!
  3. Submit your application using the form below.