Working with Us


Working with Us

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Working with Us

The goal of the Jain Foundation is to expedite development of treatments for dysferlinopathy, also referred to as LGMD2B, LGMDR2, or Miyoshi Myopathy 1.  We fund projects that are specific to dysferlin and dysferlinopathy, as opposed to broad areas of science.  We fund researchers, organizations, and companies both inside and outside the United States.

Learn what it is like to work with the Jain Foundation and partner with us to identify treatments that could help people living with dysferlinopathy

Proposed projects MUST have application to dysferlinopathy and should address gaps in knowledge that hamper the search for treatments. Funded projects span a wide variety of areas, including genetics, protein structure, the cellular function of dysferlin, the pathology of dysferlinopathy, preclinical investigation of prospective treatments, diagnostics, and disease natural history.  For examples of the types of projects we fund, please view our currently funded projects.

The SAB evaluates proposals, monitors projects, participates in updates with researchers, and acts as a clearinghouse for information on dysferlin and dysferlinopathy for a variety of stakeholders: researchers, drug developers, clinicians, other advocacy foundations, and patients.

Preproposals should summarize the prospective research topic, and how it relates to the goal of developing therapies for dysferlinopathy including removing roadblocks to therapy development.  The preproposal should address 1) the overall goal of the research, 2) the experiments to be done in the first year (if a multiyear effort is contemplated), 3) the resources needed (equipment, antibodies, animals), and 4) an approximate cost (a detailed budget is not required at this stage).

The Jain Foundation gives feedback on preproposals including our level of interest in the proposed research, what topics contained in the preproposal we view as most relevant, suggestions for refining the proposed aims to avoid redundancies with the work of others, and suggestions on resources that are available (e.g. animal models, antibodies).

When submitting full proposals, please use the cover page and budget template. We award funding for 12 months at a time, except in rare circumstances. Therefore, even if a longer-term project is contemplated (e.g. one involving animal breeding), the proposal should specify what will happen in the upcoming 12 month period. It is also important to include a detailed timeline of the proposed project’s activities, so that the Foundation can assess the timing and budget. We also encourage researchers to be realistic about the amount of work that can be accomplished in a 12-month period with the requested budget.

We work closely with the researcher to refine the initial proposal. If the proposal covers a topic which is important to the dysferlin field and our mission, then it is worth refining so that it will make the greatest contribution to the field. We may suggest changes in experimental design, collaborations with other researchers, or the reprioritization of specific aims, in order to maximize the impact of a proposed project on achieving our mission.

We do not fund competing projects on the same topic. If we receive a proposal whose scope overlaps with an existing project, we may decline to consider it on these grounds, or if there appears to be a partial but not complete overlap, put the respective researchers in contact with one another to investigate how their different areas of expertise may be used in a collaborative manner.

We often work with researchers for many years on projects. Renewal proposals should follow the same format as the original proposal, but also give a summary of findings from the previous year, list experiments that were not completed, and why those studies were not completed and if they will be pursued in the following year. In addition, researchers preparing a renewal proposal are encouraged to discuss possible aims with us during updates to solicit our comments and level of interest.

  • As a private non-profit foundation, we do not pay overhead to the research institution.
  • We typically disburse funding in three installments, one at the beginning of the project, one at the six-month point, and one at the project end.
  • We require quarterly financial reports, as well as a final (end-of-project) financial report which must be received before the final payment of funds is issued.
  • In compliance with U.S. law, non-profit research institutions outside the U.S. or for-profit organizations receiving our funding are required to submit yearly Expenditure Responsibility Reports documenting the use of funds for the stated purpose. These are in addition to the quarterly financial reports.
  • Researchers are contractually obligated to make all scientific resources (cell lines, animal models, antibodies, etc.) generated via Jain Foundation support available to the dysferlin research community. A reasonable length of time is provided for the researcher to characterize and report their results in the scientific literature. Sharing of scientific resources may include conditions (e.g. co-authorship), and the Jain Foundation will work with researchers to deposit their research materials in appropriate repositories to improve accessibility.

Our goal with these updates is to see how the project is progressing, and identify issues that our extensive knowledge of the field might help solve. The updates are in the spirit of a “lab meeting” in which the SAB and the researcher share results, interpretations, and ideas for subsequent work in an informal discussion. We often facilitate conversations between dysferlin researchers if results from different projects reveal information that is helpful to both parties, or if specific scientific reagent available from another lab may help the progress of a project.

Our funded researchers are obligated to give presentations on their work at Jain Foundation conferences and webinars. The conferences are multidisciplinary, encompass both clinical studies and a variety of scientific topics that are focused on understanding and finding a therapy for dysferlinopathy.  Patients living with dysferlinopathy also share their experiences at our conferences, so that researchers can meet the people who stand to benefit from their work.

In the rare disease space, we are limited in many ways, including available scientific resources, technical expertise, background knowledge and funding. Therefore, it is critical that we make efficient use of the assets that we do have. Collaborating to share the limited reagents, knowledge and expertise that are available in the dysferlin field is essential to help all of our funded researchers achieve the goals of their individual projects and bring us closer to a first treatment for dysferlinopathy. Therefore, we actively identify areas where collaborations are beneficial and mediate their formation. Our conferences and quarterly updates help us identify situations that can benefit from collaborations and we then set up joint discussions between research groups so that they can help each other overcome challenges and produce better and more meaningful results.

Access to Research Tools and Tips

Research projects in a specialized field such as dysferlin depend heavily on the existence and availability of a variety of resources, such as animal models, antibodies, cell lines, and patient samples and disease specific protocols.  We recognized early on that this is a major challenge for our mission and have worked with a variety of researchers and companies to create these resources and protocols and to make them available to researchers.  By doing so, we estimate that we have saved years of time that would have been wasted by independent researchers building redundant reagents in their respective laboratories and struggling to identify the best assessment methods.  These things have expanded the field of dysferlinopathy by lowering the bar to entry for interested scientists.  All interested scientists are welcome to the research tools and tips we have created and to inquire about more specific reagents and protocols that maybe available from Jain Foundation funded laboratories.