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Our Strategy and Impact

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Our Strategy and Impact

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Our Strategy and Impact

Our goal at the Jain Foundation is to expedite development of a treatment or cure for the dysferlinopathy, also referred to as LGMD2B, LGMDR2, Miyoshi Myopathy 1. As with most rare diseases, we seek to fill the void in expertise and leadership that occurs when traditional funding sources are scarce or absent. Our focus is on finding practical solutions to both immediate and foreseeable challenges to therapy development. These include discovery of disease mechanisms, establishing pre-clinical and clinical testing methods, improving patient diagnosis, and establishing a patient registry. By solving as many of these issues as we can, we hope to make therapy development for dysferlinopathy quicker and lower risk.

Project proposals submitted for funding MUST have application to dysferlinopathy and address an area of need that is essential for therapy development. Along with funding, approved projects receive expert guidance and advice from our internal SAB, access to dysferlin specific research reagents, and connections to other dysferlin researchers for advice and collaborative opportunities.  For examples of the types of projects we fund, please view our currently funded projects.  New ideas are always welcome, and we encourage preproposals on novel projects to begin a conversation around their alignment with our mission.

Funding Model

The Jain Foundation funds research using a non-traditional funding model, including:

  • An in-house, full-time scientific team that reviews proposals and advises on the development of a potential project, as opposed to an external scientific advisory committee that comments once on a proposed project and has no responsibility for its success.
  • An interactive project management process, including direct input from Jain Foundation experts who help with the experimental design and maintain close communication with the funded researchers to help navigate the inevitable challenges that occur with scientific projects. Quarterly updates with funded researchers (in the style of lab meetings) conducted by conference call establish and maintain this unique relationship.
  • Focused attention on the elimination of roadblocks that arise from lack of research materials, through the creation and distribution of research tools and reagents, including DNA constructs, antibodies, cell lines, and animal models.
  • Active collaboration among scientists in the dysferlin research community mediated by Jain Foundation staff and aimed at reducing redundancy and maximizing the impact of projects.
Impact

While we have yet to find a first treatment for dysferlinopathy, the progress we have made is evident in the growing industry partnerships that we have established and maintained.  Demonstrating to industry that dysferlinopathy has been sufficiently derisked and has the patient registry and background knowledge to conduct successful clinical trials with a potential therapy has us on the doorstep of a first treatment for our community.