The Jain Foundation is a non-profit disease foundation established by Ajit Jain of Berkshire Hathaway in the hopes of curing dysferlinopathy, also referred to as LGMD2B, LGMDR2, or Miyoshi Myopathy 1, which afflicts his son. Ajit recruited Dr. Plavi Mittal to lead the foundation and during her tenure from 2005 – April 2017 she built the goals, principles, and philosophy by which the foundation still runs today. The Jain Foundation is currently 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, but are also referred to as LGMD2B, LGMDR2, or Miyoshi Myopathy 1 (MM1). Dysferlinopathy is an orphan disease afflicting approximately 8-10 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 dysferlinopathy patients about their disease and helping them with their diagnosis.
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 our Research section.
Non-traditional Funding model
The Jain Foundation funds research using a non-traditional funding model in which all proposal reviews and funding decisions are carried out exclusively by an in-house scientific advisory board. The explicit goal of the Jain Foundation is to expedite development of a treatment or cure for dysferlinopathy.
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. Visit the follow pages for more information about our patient registry, diagnostic resources, and clinical information.