The Jain Foundation was established by Ajit Jain of Berkshire Hathaway in the hopes of curing dysferlinopathy, which afflicts his son. It is a non-profit organization located in Seattle, Washington, USA and is privately funded. The foundation does not solicit funding from patients or other sources.
The Jain Foundation's mission is to cure muscular dystrophies caused by dysferlin protein deficiency. These dystrophies are collectively termed dysferlinopathy, and include Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi muscular dystrophy 1 (MMD1). Dysferlinopathy is an orphan disease afflicting approximately 5 people/million and receives little or no funding from traditional sources. The Foundation's focused strategy includes funding and actively monitoring the progress of scientific research projects in key pathways towards a cure, providing financial and logistical support to promising drug candidates to accelerate them to clinical trials, funding clinical trials and studies, encouraging collaboration among scientists, and educating LGMD2B/Miyoshi patients about their disease and helping them with their diagnosis (e.g., funding dysferlin protein and gene mutational analysis).
Dysferlin Research Institute The Jain Foundation funds research projects around the world to better understand and develop therapies for this rare disease and plays an active role in managing the projects it funds. In addition to requiring accountability and transparency, the Jain Foundation encourages the sharing of ideas and resources between research teams in order to maximize efficiency and hasten development of a cure for dysferlinopathy. For more information, please visit the Jain Foundation's Dysferlin Research Institute.
Scientific Advisory Board All proposal reviews and funding decisions are carried out exclusively by an in-house Scientific Advisory Board. Please click here for more information.
Patient Registry The Jain Foundation also supports diagnosis of dysferlinopathy patients at the genetic level to enable rigorous natural history analysis of the clinical progression of dysferlinopathy. For more information about our patient registry, diagnostic resources, and clinical information, please visit Patient & Physician Resources.
For more information about us: