Jain Foundation Inc.

The Jain Foundation operates as a hyper-specialized research funder with a singular, non-negotiable focus: dysferlinopathy, the rare genetic muscle disease caused by mutations in the dysferlin gene, also classified as LGMD2B, LGMDR2, and Miyoshi Myopathy 1. Unlike traditional grant-making foundations, Jain functions as an internal research accelerator — its in-house scientific staff, including Co-Presidents Laura Rufibach, PhD (Baylor/UW molecular genetics) and Doug Albrecht, PhD (UCLA/UNC muscle adaptation), conduct all proposal reviews and funding decisions without external peer reviewers or outside advisory board members. This structure means applicants engage directly with working scientists who know the dysferlin field comprehensively and personally.

The foundation favors researchers with either direct expertise in dysferlin biology or demonstrated capability in adjacent areas — membrane repair, calcium homeostasis, muscle fiber degeneration, gene therapy delivery, or drug candidate development — that can be meaningfully applied to dysferlinopathy. Both academic institutions and for-profit companies are eligible. Some of the largest awards have gone to commercial entities: Kinea Bio received $1.1 million in 2025 for gene therapy development. International institutions are actively sought and consistently funded, with major grantees at Newcastle University (UK), University of British Columbia (Canada), Curtin University (Australia), Universidad Mayor (Chile), and the University of Basel (Switzerland).

The typical relationship follows a collaborative, iterative arc. Applicants submit an optional pre-proposal of 1-2 pages, receive direct scientific feedback within 2-4 weeks, then develop a full proposal. After submission, 3 or more rounds of substantive discussion are common before a final award decision. Post-award, the relationship deepens further: funded researchers participate in quarterly calls, attend annual Foundation conferences, share all scientific resources with the broader dysferlin community under contractual obligation, and report financial progress on a rolling basis.

First-time applicants should know the foundation actively coordinates its funded portfolio to prevent duplication. Reviewing active and completed projects on the foundation's website before applying is essential — proposals that overlap substantially with ongoing funded work will not advance regardless of scientific quality. The foundation's application restrictions are absolute: 'Any proposed project that does not have application to this disease will not be considered.' Broad muscle disease proposals framed loosely around dysferlinopathy will not pass this test.

Total annual giving has ranged from $3.6 million (FY2020) to $5.2 million (FY2023), with FY2024 disbursements of $5.3 million recorded against $51.2 million in total assets. The foundation is entirely endowment-funded — there is no annual fundraising cycle and no dependency on external contributions for sustaining grant activity. This structural stability means grant volume is predictable year to year and unaffected by donor behavior or economic disruption. Assets grew dramatically in FY2023 to $56.2 million following a $26.9 million contribution received that year, before settling back to $51.2 million in FY2024.

Across 132 documented grants in the foundation's public data, the total recorded giving is $15.4 million. The average grant size is $116,552 and the database-reported median is $77,900, with a range from $8,851 to $939,234 (a multi-year award to Newcastle University's Dr. Volker). Individual project grants cluster most heavily in the $60,000–$275,000 range per award. Multi-year relationships with individual researchers are the norm and represent the foundation's core investment pattern.

The top five grantees by cumulative total illustrate the foundation's long-term thesis. Newcastle University researchers (Drs. Straub and Volker) have collectively received over $3.2 million across 9 grants — the single largest sustained investment. NYU (Dr. Kang) has received $825,000 across 4 grants; University of Maryland (Dr. Bloch) $847,000 across 5 grants; Duke University (Dr. Bursac) approximately $1.0 million across 5 grants; and Brigham Young University (Dr. Van Ry) $515,000 across 4 grants. This pattern of repeated investment signals that the foundation rewards scientific productivity and continuity over novelty.

Geographically, New York (15 grants), Massachusetts (10), Maryland (6), North Carolina (6), and Ohio (6) dominate among U.S. states. International recipients represent approximately 30–40% of grants by count, spanning the UK, Australia, Canada, Chile, Switzerland, and Belgium. All recorded grants are designated Scientific Research Grants — there are no operational support, capacity-building, or advocacy funding streams for external organizations. A notable outlier is the $600,000 grant to the Project 8p Foundation, suggesting the foundation will fund disease-adjacent collaborative partners when scientific mission alignment is strong.

The table below compares the Jain Foundation with four asset-comparable private foundations in the Health NTEE category. Most peer foundations do not publish detailed giving data publicly; figures draw on available IRS 990-PF filings and public records.

The Jain Foundation is meaningfully distinct from its asset-comparable peers in three ways. First, it maintains fully open, rolling applications — a rarity among private foundations of comparable size, where invited-only or relationship-driven models dominate. Second, its endowment stability ($51M+ in assets with consistent $4–5M+ annual disbursements) positions it as a highly reliable long-term partner unaffected by donor cycles or annual fundraising pressure. Third, its in-house all-PhD scientific review model — with no external advisory board — creates a uniquely direct and technically sophisticated applicant-reviewer relationship well suited to advancing translational research. The foundation's willingness to fund international institutions, commercial entities, and disease-adjacent organizations further distinguishes it from the peer group.

The most significant 2025 announcement is a $1.1 million grant to Kinea Bio, Inc. for the development of KNA-155, a dual-AAV gene therapy candidate designed to restore dysferlin expression. This is one of the foundation's largest single awards to a commercial partner and signals an intensifying focus on late-stage clinical translation after years of investment in basic and translational science.

2025 is the foundation's 20th anniversary year. The organization has highlighted over $45 million invested across 140+ research projects, a Dysferlin Registry that has grown to 1,400+ genetically confirmed individuals worldwide (from 840+ in 2019), and describes its position as 'on the doorstep of a first treatment for our community.' A Phase 1 gene therapy trial using AAVrh74 is actively enrolling non-ambulant adult dysferlinopathy patients.

The most strategically significant programmatic expansion is Project CNNM2, a new initiative applying the Jain Foundation's disease-acceleration model to CNNM2-associated disorders. Led by Plavi Jain Mittal, PhD (Executive Director and CSO), with Audrey Ostenson as Director of Research and Data Strategies, the project accepts research funding inquiries at CNNM2ResearchFunding@jain-foundation.org. This marks the first time the foundation has diversified its scope beyond dysferlinopathy.

A leadership transition occurred in January 2026: Joshua Thayer, Esq., who served as General Counsel from 2015 through January 2026, shifted to an advisory role covering development transactions, patient education, and strategic matters. His departure from the General Counsel seat may reflect organizational restructuring as the foundation enters a more intensive clinical commercialization phase. The core scientific leadership — Laura Rufibach, PhD and Doug Albrecht, PhD (both Co-Presidents) — remains unchanged.

Direct relevance to dysferlinopathy is the only eligibility criterion that matters. The foundation's application restrictions state explicitly: 'Any proposed project that does not have application to this disease will not be considered.' This eliminates broad muscle disease or general myopathy proposals — applicants must demonstrate mechanistic, therapeutic, or diagnostic relevance to dysferlin deficiency specifically. Researchers working on adjacent biology (calcium handling, membrane repair, lipid metabolism) should explicitly articulate the dysferlin connection in the first paragraph.

Submit a pre-proposal before building a full application. Email researchfunding@jain-foundation.org with a 1-2 page document covering four elements: (1) the overall research goal, (2) planned first-year experiments, (3) resources needed (equipment, antibodies, animal models), and (4) approximate cost without a detailed budget. In return, foundation PhD scientists will respond directly with feedback on alignment, suggestions for refinement, and identification of shared resources available at no cost — a significant advantage unavailable at most foundations.

A detailed experimental timeline is mandatory. Proposals submitted without an aggressive, chart-format timeline using the foundation's provided template are automatically rejected — this is not a soft guideline. The timeline must specify individual experiments by time period and reflect genuine ambition.

Waive institutional overhead before submitting. The foundation funds zero indirect costs. Failing to secure an institutional overhead waiver in advance will delay or disqualify your application. This waiver must be institutional policy, not simply a PI commitment.

Plan for resource-sharing obligations. Funded researchers are contractually required to make all scientific resources produced under the grant — cell lines, animal models, biospecimens, proteomic data — available to the dysferlin research community. Ensure your institution's technology transfer and legal teams can comply before applying.

Leverage the foundation's shared resource library in your proposal design. Available tools include BLA/J dysferlin-deficient mice (from Jackson Laboratory), human dysferlin protein, biospecimens and natural history datasets from the Clinical Outcome Study, iPSC lines, and antibodies. Proposing to use these resources signals field literacy and can reduce proposed costs, strengthening the case for funding.

Expect a multi-round scientific dialogue, not a one-shot review. Three or more rounds of substantive discussion with foundation scientists are standard before a final decision. Treat this as collaborative refinement — the foundation's team will suggest controls, flag overlapping funded work, and connect applicants with complementary researchers in the funded portfolio.