About Us: Overview
The mission of the SMA Foundation is to accelerate the development of treatments for Spinal Muscular Atrophy. SMA is the leading genetic cause of death in young children.
The SMA Foundation was established in 2003 by Loren Eng and Dinakar Singh, parents of a child with SMA.
Today, the SMA Foundation is the leading funder of SMA research worldwide--around $150M has been spent on basic, translational, and clinical research. We have invested more than $30M on developing critical, validated research tools and other drug discovery assets. Our mandate is to ensure that all of the results of our research funding are made readily available to every SMA researcher with minimal cost and obligation.
The SMA Foundation operates as a unique blend of non-profit, venture capital, and biotech entities. Our leadership comprises seasoned pharmaceutical, biotech, and finance professionals. Because of our innovative strategy and business model, the SMA Foundation frequently serves as an advisor to government, non-profits, universities, professional societies, and the private sector.
One of our most important functions is to broker the exchange of critical information and foster new collaborations/alliances. The SMA Foundation serves as the hub and clearinghouse of information for the diverse universes that are involved in drug development. We connect pharmaceutical companies, biotech, academia, non-profits, clinicians, patients, government/regulators, and the media.
The work of the SMA Foundation has been recognized by the national media including: ABC News, Bloomberg Markets, Forbes, Fox News, The New York Times, Nightline, Parents Magazine, and the Today Show. The SMA Foundation has also received the Child Neurology Foundation’s Advocacy Award of Merit and the Giblin Foundation Award.
SMA Foundation Goals:
To help accelerate the development of treatments, the SMA Foundation is focused on four key strategies:
- Building alliances with academic and industry collaborators
- Developing in vitro and in vivo research tools for use by the research community and industry collaborators
- Funding novel preclinical and clinical research in the SMA field
- Educating legislators, governmental agencies, and the media about SMA research
Structure & Governance:
The Spinal Muscular Atrophy Foundation is a 501(c)(3) tax exempt organization as determined by the Internal Revenue Service. Therefore, the Foundation accepts contributions from individuals and from public and private grant-making organizations. Operations and expenditures are supervised by a Board of Directors. Our Advisory Board provides strategic guidance and advises the Foundation on research investments.