Jain Foundation
- Company typePrivate
- Founded2005
- HeadquartersSeattle, United States
- Headcount1–10
- GTM typeB2B
- OfferingServices
Jain Foundation firmographics
Firmographics- Name
- Jain Foundation
- Legal name
- Jain Foundation Inc.
- Website
- https://jain-foundation.org
- Company type
- Private
- Founded year
- 2005
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Ownership category
- akta.pro rank
Jain Foundation industry classification
Industry- Product category
- Muscular Dystrophy Research
- NAICS
- Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Research and Development in Biotechnology (except Nanobiotechnology) (541714), Scientific Research and Development Services (5417)
- SIC
- Services-Commercial Physical & Biological Research (8731), Services-Medical Laboratories (8071), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industries
- Health & Medical Research Grantmaking Foundations (BPAGAKAL), Neuromuscular Medicine (ALS, Myasthenia, Neuropathy) (HLAKAIAD), Neurogenetics & Rare Neurologic Diseases (HLAKAIAO)
Keywords
Where Jain Foundation is headquartered
LocationHeadquarters
- HQ city
- Seattle
- HQ country
- United States
- HQ region
- North America
Offices2 records
Markets served
Jain Foundation business model
Business model- GTM type
- B2B
- Offering type
- Services
- Cost components
- Personnel, Technology or R&D, Operations, Marketing or Sales, Others
Revenue model
- Endowment and Family Funding: The Jain Foundation is a non-profit organization funded primarily through the Jain family's endowment. The foundation does not generate commercial revenue but distributes funds through research grants to advance its mission of finding cures for dysferlinopathy and CNNM2-associated diseases.
Go-to-market motion3 records
Distribution channels4 records
Marketing channels8 records
Jain Foundation product offering
Product offeringCore offering
The Jain Foundation is a non-profit research foundation that funds, coordinates, and conducts research to find cures for dysferlinopathy (LGMD2B/LGMDR2/Miyoshi Myopathy 1) and CNNM2-associated diseases. It provides free research tools (animal models, cell lines, antibodies, DNA constructs), human biospecimens, natural history clinical data, preclinical MRI platform services, and a patient registry to support basic, translational, and clinical research globally.
Product overview
The Jain Foundation is a non-profit research foundation founded in 2005 that operates two distinct research programs: the Dysferlinopathy Program (for dysferlinopathy/LGMD2B) and Project CNNM2 (launched September 2025 for CNNM2-related diseases). The foundation provides a comprehensive research ecosystem including the Dysferlin Registry patient database, Clinical Outcome Studies (COS and COS2), Data Resources with natural history and omics datasets, Human Biospecimens, Animal Models including multiple mouse strains and zebrafish, a Preclinical MRI Platform, the Automated LGMD Diagnostic Assistant (ALDA), and the Dysferlin Research Blog for knowledge dissemination. These products and services are designed to support basic, translational, and clinical research toward developing treatments for dysferlinopathy.
Differentiator
Problem solved
Functional benefit
Brands
- Project CNNM2: A separate team formed in September 2025 investigating diseases related to mutations in the CNNM2 gene, which regulates magnesium handling, with present-from-birth symptoms in the kidney and sometimes the brain.
Products and services
- Dysferlin Registry A patient registry for individuals with dysferlinopathy (LGMD2B, LGMDR2, Miyoshi Myopathy 1) that supports patient registration, inquiry, and recruitment for clinical studies and trials. The registry is the foundation's primary tool for patient engagement and clinical trial readiness.
- Project CNNM2 A research program launched in September 2025 focused on finding cures for diseases associated with mutations in the CNNM2 gene, which regulates magnesium handling, with present-from-birth symptoms in the kidney and sometimes the brain. The program provides research funding, registry support, and is developing dedicated research tools.
- Clinical Outcome Study (COS) International multicenter clinical study for dysferlinopathy that evaluated over 200 genetically confirmed patients with medical, physiotherapy, MRI, and questionnaire assessments over 2-10 years. Conducted at 16 sites in 9 countries, providing comprehensive natural history data.
- Data Resources Access to natural history clinical data sets, miRNA, RNA, protein, and cytokine data sets, and mouse proteomic and lipidomic data sets for dysferlin research. Provided free of charge to researchers.
- Human Biospecimens Plasma, serum, DNA, RNA, fibroblasts, cell lines, and biopsy material from genetically confirmed dysferlinopathy patients, including samples from the Clinical Outcome Study. Provided to researchers upon request.
- Animal Models Dysferlin-deficient mouse lines including Bla/J, A/J, SJL/J, Dysf-/-, KI32, and R1925X strains, plus zebrafish models, available for research worldwide through Jackson Laboratory with foundation approval.
- Preclinical MRI Platform MRI platform developed specifically for evaluation of potential therapeutic interventions in mouse models of dysferlinopathy, supporting preclinical drug development.
- Automated LGMD Diagnostic Assistant (ALDA) An automated diagnostic assistant tool for healthcare professionals to aid in diagnosing limb-girdle muscular dystrophy, including dysferlinopathy and related LGMD subtypes.
- Research Grants Program Grant-based funding for basic, translational, and clinical research to academic and industry researchers studying dysferlinopathy and CNNM2-associated diseases. The foundation solicits proposals and monitors funded project progress.
- Study Recruitment Service Support for recruiting dysferlinopathy patients from the Dysferlin Registry for surveys, studies, and clinical trials, enabling researchers to access a trial-ready patient cohort.
Quantifiable outcome
- 83% retention rate achieved in COS clinical study vs. 70% industry average
- +3 more outcomes
Companies that use Jain Foundation
Customer profileNamed customers3 records
Segments4 records
Ideal customer profiles3 records
Jain Foundation technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature5 records
Jain Foundation partnerships and signals
Strategic signalPartnerships
17 partnerships are on record, tiered core and minor.
- PROOF Centre of Excellence (Vancouver, BC, Canada)coreCollaboration for biomarker discovery and validation in dysferlinopathy. PROOF Centre (Centre of Excellence for the Prevention of Organ Failure) provided expertise in computation, 'omic' science, and biomarker workflow. Project resulted in identification of blood-based biomarkers associated with differences in muscle function.
- Wellstone Muscular Dystrophy Specialized Research Center (University of Iowa)coreWellstone Center maintains a repository of broad spectrum of skeletal muscle biopsies from neuromuscular disease patients including dysferlinopathy. Provides biopsy samples to researchers upon request.
- Jackson Laboratory (JAX)coreJAX serves as the repository for multiple dysferlin-deficient mouse models (Bla/J cryopreserved stock, A/J, SJL/J, Dysf-/- lines, and others). The foundation maintains private live colonies that are distributed through JAX upon foundation approval. Also hosts the KI32 private colony.
- WiCellminorWiCell provides iPS cell lines from dysferlinopathy patients, including JFNY iPS line from a patient heterozygous for the c.5713C>T mutation. Part of the dysferlin-deficient collection.
- GenethonminorDr. Isabelle Richard at Genethon developed the Bla/J mouse strain by crossing the A/J dysferlin mutation onto C57BL/6 background. Strain was donated to Jackson Laboratory in collaboration with Jain Foundation.
- Brigham and Women's Hospital, Harvard Medical SchoolcoreResearch collaboration on macrophage-mediated mechanisms in dysferlinopathy pathogenesis. Dr. Vicki R Kelley leads studies on M1-like vs M2-like macrophage phenotypes and their role in non-resolving muscle inflammation.
- Dr. Frances Lemckert (Children's Hospital at Westmead & Children's Medical Research Institute)coreCollaboration on proteomics and lipidomics analysis of dysferlin-deficient muscle, including studies on exon 40a knockout mice. Generated comprehensive datasets from 18-week old mice quadricep muscles.
- Dr. Bradley S. Launikonis (University of Queensland)coreResearch on calcium handling and ryanodine receptor (RyR1) in dysferlinopathy. Study published in Nature Communications (2025) showing how dysferlin deficiency impacts calcium leak through RyR1 and how this relates to muscle-specific pathology.
- Dr. Pascal Bernatchez (University of British Columbia)coreResearch on the link between dysferlin and cholesterol metabolism. Studies show ApoE knockout mice crossed with dysferlin-deficient mice develop worse muscle phenotype, indicating cholesterol may play a role in muscular dystrophy.
- Dr. Christoph Handschin (University of Basel)coreResearch on metabolic dysregulation in dysferlinopathy. Study published in Life Sci Alliance (2025) revealing unexpected role for dysferlin in muscle cell energy metabolism and showing PGC-1alpha overexpression accelerates disease.
- Dr. Doug Anderson (University of Rochester)coreDevelopment of StitchR technology for full-length dysferlin protein expression using dual AAV vector approach. Technology 'stitches' together two RNA fragments to create full-length transcripts for large gene delivery.
- Dr. Volker Straub (John Walton Muscular Dystrophy Research Center, Newcastle University)coreLeadership of International Clinical Outcome Study (COS) for Dysferlinopathy. Team provided patient data for studies on respiratory impairment prediction using upper limb assessments.
- Dr. Miranda Grounds (University of Western Australia)coreResearch on mechanistic basis for adverse effects of glucocorticoids in dysferlinopathy. Study investigates why daily glucocorticoid administration causes accelerated muscle strength loss in dysferlinopathy patients.
- TREAT-NMDminorInternational conference partnership for neuromuscular disease research. Foundation provides travel grants for researchers presenting dysferlin-related work at TREAT-NMD conferences.
- Muscular Dystrophy Association (MDA)minorAnnual conference partnership. Foundation staff attend MDA Clinical & Scientific Conference to engage with the muscular dystrophy research community and share dysferlin-specific research.
- Nationwide Children's HospitalcoreClinical site for gene therapy trial in dysferlinopathy using AAVrh74 vector. Trial focuses on non-ambulant patients age 18+ with established DYSF mutations on both alleles.
- CNNM2 Patients and ResearcherscoreNew program (September 2025) investigating diseases related to CNNM2 gene mutations affecting magnesium handling. Foundation provides dedicated emails ([email protected], [email protected]) and is developing research tools including CNNM2 mouse models and cell lines.
Scale indicators9 records
Recent moves7 records
Expansion highlights5 records
Jain Foundation competitors and assessment
Company assessmentDirect peers
- Coalition to Cure Calpain 3 (C3): Patient-founded nonprofit focused on finding treatments for LGMD2A/R1 (calpain 3 deficiency). Operates an almost identical playbook to Jain: maintains a patient registry, funds academic research, and provides free research tools to the field. The most direct structural analog to the Jain Foundation within the LGMD nonprofit ecosystem.
- Parent Project Muscular Dystrophy (PPMD): Disease-specific nonprofit dedicated to Duchenne muscular dystrophy. Operates a patient registry, funds research, develops standards of care, and partners with industry on clinical trials. Same patient-founded, vertically integrated rare-disease foundation model that Jain has applied to dysferlinopathy.
- Speak Foundation: Dysferlinopathy-focused patient foundation providing support, education, and advocacy for individuals with LGMD2B/R2 and Miyoshi Myopathy. Directly overlaps with Jain's patient community and serves as a complementary peer in the same disease space.
- FSHD Society: Patient-driven nonprofit focused on facioscapulohumeral muscular dystrophy. Operates a patient registry, funds research, and convenes the field through scientific meetings — the same integrated model Jain uses for dysferlinopathy. Comparable rare-disease foundation structure.
- Cure SMA: Spinal muscular atrophy nonprofit that has driven one of the most successful translational models in rare disease, including standards of care, patient registries, and partnered clinical trials. Functions as a benchmark for what a well-run disease-specific rare disease research foundation can achieve.
- Myotonic Dystrophy Foundation (MDF): Patient-founded nonprofit focused on myotonic dystrophy (DM1/DM2). Maintains a patient registry, funds research grants, and convenes an annual scientific meeting. Comparable to Jain in scope, scale, and operating model within the muscular dystrophy nonprofit ecosystem.
- AFM-Téléthon: French neuromuscular disease nonprofit and parent of Généthon, which developed the Bla/J dysferlin mouse strain now maintained by Jain. The closest European analog to a vertically integrated rare-disease research foundation, combining fundraising, gene therapy development, and clinical infrastructure.
Broad incumbents
- Muscular Dystrophy Association (MDA): Large, established muscular dystrophy nonprofit supporting research and care across all MD subtypes including dysferlinopathy. Operates MDA Care Centers, a broad research grant program, and an annual Clinical & Scientific Conference. Broader and more diversified than Jain, but overlaps significantly on patient support and research funding.
- TREAT-NMD Alliance: International network for neuromuscular disease research and clinical trial infrastructure, including patient registries and care standards. Partners with Jain on conference grants and convening; relevant as a cross-disease infrastructure peer rather than a direct fundraiser.
Others
- National Organization for Rare Disorders (NORD): Umbrella advocacy organization for the rare-disease community in the US, providing policy advocacy, patient assistance programs, and convening for disease-specific organizations like Jain. Adjacent rather than competitive, but a key peer in the rare-disease ecosystem in which Jain operates.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks1 record
Key highlights6 records
Customer concentration
Jain Foundation social profiles
Digital presenceJain Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
Jain Foundation leadership team
Management profileNumber of profiles
Profiles9 records
Jain Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
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Jain Foundation M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about Jain Foundation
What does Jain Foundation do?
The Jain Foundation is a non-profit research foundation that funds, coordinates, and conducts research to find cures for dysferlinopathy (LGMD2B/LGMDR2/Miyoshi Myopathy 1) and CNNM2-associated diseases. It provides free research tools (animal models, cell lines, antibodies, DNA constructs), human biospecimens, natural history clinical data, preclinical MRI platform services, and a patient registry to support basic, translational, and clinical research globally.
Is Jain Foundation a public or private company?
Jain Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Jain Foundation founded?
Jain Foundation was founded in 2005. It employs 1 to 10 people.
Where is Jain Foundation based?
Jain Foundation is headquartered in Seattle, United States, in the North America region.
How does Jain Foundation make money?
One revenue line is on record: endowment and Family Funding.
Who are Jain Foundation's main competitors?
Direct peers on record are Coalition to Cure Calpain 3 (C3), Parent Project Muscular Dystrophy (PPMD), Speak Foundation, FSHD Society, Cure SMA, Myotonic Dystrophy Foundation (MDF) and AFM-Téléthon. Broad incumbents are Muscular Dystrophy Association (MDA) and TREAT-NMD Alliance. National Organization for Rare Disorders (NORD) is listed as an others.
Does Jain Foundation have an API?
No public API is recorded for Jain Foundation.
What industry is Jain Foundation in?
Jain Foundation's product category is Muscular Dystrophy Research. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8731.