About the Foundation

About Us

The Foundation Fighting Blindness was established in 1971 by a passionate group of families driven to find treatments and cures for inherited retinal diseases that were affecting their loved ones. At that time, little was known about these blinding retinal degenerative diseases. Very little research was being done, and there were no clinical trials for potential treatments.

The Foundation’s goal was clear and focused: To drive the research that would lead to preventions, treatments, and vision restoration for the spectrum of degenerative retinal diseases, specifically macular degeneration – including age related macular degeneration, retinitis pigmentosa, Usher syndrome, Stargardt disease and Leber congenital amaurosis (LCA). Together these conditions affect more than 10 million Americans and millions more throughout the world.

Today, the Foundation Fighting Blindness is the world’s leading private funder of retinal disease research. That funding has been a driving force behind the progress toward cures, including the identification of more than 270 genes linked to retinal disease, and the launch of over 40 clinical trials for potential treatments.

On an annual basis, the Foundation Fighting Blindness and the Foundation’s Clinical Research Institute fund more than 81 research grants. The research projects are conducted by more than 105 research investigators at 70 institutions, eye hospitals, and universities in the United States. The Foundation funding extends internationally to laboratories in Australia, Belgium, Brazil, Canada, Denmark, England, Finland, France, Germany, Israel, Italy, Mexico, the Netherlands, Poland, and Switzerland.

 

More about the Foundation Fighting Blindness  

  • The Foundation funds innovative and cutting-edge research in promising areas such as genetics, gene and stem-cell therapies, retinal cell transplantation, and pharmaceutical and nutritional therapies.
  • Foundation funding often provides the critical bridge between discovery research, proof of concept, and corporate investment in clinical trials and commercialization.
  • The mission of the Foundation’s Clinical Consortium is to accelerate the development of treatments for inherited retinal diseases (IRDs) through collaborative and transparent clinical research.  Studies conducted through the Clinical Consortium are led by an international group of more than 40 experts in IRDs and use state-of-the-art research protocols.  Data collected through our clinical studies shed light on the natural progression of the IRDs and can be used to optimize the design of clinical trials.  Because these studies are essential for the successful development of new treatments, they represent an ideal partnering opportunity for commercial entities and patient interest groups.  
  • The RD Fund (Retinal Degeneration Fund) is a 501(c)(3) not-for-profit subsidiary of the Foundation Fighting Blindness.  The RD Fund is a venture philanthropy vehicle created to help accelerate life-changing outcomes for people with retinal degenerations through direct mission related investments in therapeutic companies. RD Fund investments are funded by donations and serve the mission of the Foundation Fighting Blindness – to develop preventions, treatments and cures for retinal degenerative diseases, including Stargardt disease, retinitis pigmentosa, Usher syndrome, and macular degeneration.  The RD Fund was launched with over $70M under management and is governed by an independent board of directors.  With success, all proceeds are returned back to the RD Fund and the Foundation Fighting Blindness to provide resources to further its mission.  For more information, please visit www.RDFund.org
  • The Foundation is a 501(c)(3) charitable organization. Since its inception in September 1971, the Foundation has raised more than $891million.
  • The Foundation is an Accredited Charity by the Better Business Bureau Wise Giving Alliance. We are also pleased to be rated as 4 stars (top rating) for Accountability and Transparency by the Charity Navigator Website. Our overall Charity Navigator rating is three stars.
  • On an average annual basis, the Foundation has invested approximately 79 percent of its budget in research and public health education programs. For more information about Foundation finances, go to Financial Reporting.
  • The Foundation has 41 volunteer-led chapters across the U.S. These dedicated volunteers raise funds, increase public awareness, and provide support to their communities.
  • The Foundation’s VisionWalk program holds fundraising walks in over 40 cities nationwide.  Since its inception the Foundation VisionWalk program has raised more than $62 million for vision research.

More Information about Retinal Degenerative Diseases

  • Retinitis pigmentosa and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss leading to legal and/or complete blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.
  • Age-related macular degeneration (AMD) has both lifestyle and inherited risk factors. The condition is characterized by a progressive loss of central vision. AMD is the leading cause of blindness in adults over age 55 in the U.S. and other developed countries.
  • The Foundation provides information and outreach programs for patients, families and professionals. For more information about the Foundation or retinal degenerative diseases contact the Foundation at info@FightingBlindness.org.

Support our Mission

To Support the Foundation’s mission through a personal donation (Donate button) or to include the Foundation in your estate planning go to: FightingBlindness.org/legacy-giving

Additional Resources

Foundation Fighting Blindness Annual Reports
Foundation Fighting Blindness Board of Directors  
Foundation Fighting Blindness Leadership & Management

Leading retinal research scientists praise the advances enabled by the Foundation.

  • Morton F. Goldberg, MD
    Wilmer Eye Institute, Johns Hopkins Univ. Hospital; served as Director of Wilmer for 15 years.

    “The Foundation Fighting Blindness is an extraordinary organization. It has given hope to people who didn’t previously have hope, and it has supported the most important fundamental research in the retinal degenerations being carried out anywhere in the world today. Thanks to the Foundation, I have confidence that we will understand and be able to successfully treat many of these (retinal degenerative) diseases in the relatively near future... we are on the verge of human clinical trials and that would not have happened without the support of the Foundation Fighting Blindness.”
     
  • Stephen P. Daiger, PhD
    Human Genetics Center, Univ. of Texas Health Science Center

    “This incredible flowering of knowledge…was nursed into existence by the Foundation Fighting Blindness…If you were to take the thousand most important papers published in the past 15 years in the field of inherited retinal diseases, you would find that over 900 have authors supported by this Foundation.”
  • Raymond D. Lund, PhD
    FRS, Univ. of Utah Health Science Center, Moran Eye Center

    “The Foundation has given a sense of hope to the families that are affected. They’ve pulled in scientists like me and others to be interested in the problems and apply our knowledge…it’s a proactive thing. The Foundation says we need this problem solved, how do we do it. There is no other foundation as focused as this one on these problems.”
  • Donald J. Zack, MD, PhD
    Wilmer Eye Institute, Johns Hopkins Medical School

    “The Foundation, existing as an independent private entity, is able to very quickly fund young investigators and fund new and exciting projects. The Foundation has really played a major role in getting a number of important projects off the ground, which would not have happened without its support. The Foundation Fighting Blindness has stimulated interaction and collaboration between different scientific groups and centers, and it has funded a variety of research meetings that have helped scientists learn about areas outside their own, so they can do more productive and more powerful research.”
     
  • Edwin Stone, MD, PhD
    Univ. of Iowa Hospitals and Clinics, Dept. of Ophthalmology & Visual Sciences

    “The Foundation Fighting Blindness has played a tremendous role in my development as an ophthalmologist and scientist and in the growing of our program. The Foundation has gathered together scientists from all over the world who are interested in a similar thing: to try to cure these diseases…People have to say, ‘yes I’m interested in helping this year, and I’m interested in helping next year because it just isn’t Ok for a child to be born missing one gene product in their retina.’ The Foundation has been a kind of ‘antenna’ conveying the resources from society to the scientist and they have done a very successful job of it.”