Foundation’s Eye Donor Program Closes

June 1, 2016

After a thorough and independent review of the Foundation’s eye donor program, the Foundation has decided to close the program, as described below. 

We would like to express our sincere appreciation to the families of donors. Their contributions played an invaluable role in the research for treatments and cures of retinal diseases.  We would also like to  thank all current members of the donor program and those who have expressed interest in participating, for your generous willingness to support our mission.

If you would like to donate your eyes to research, or, possibly for sight-saving cornea donation, you may do so through Donate Life America.  Donate Life America is a 501(c)3 not-for-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye, and tissue donation.   You can register as a donor via their website – www.donatelife.net.

Please note this does not affect My Retina Tracker®, the FFB supported international registry for individuals and families with inherited retinal disease.  My Retina Tracker is not affiliated with the eye donor program.  My Retina Tracker continues to grow and flourish.

Background to Eye Donor Program

The Foundation has supported an eye donor program for the past 30 years.  Through this program, people with a retinal disease could register to become an eye donor and donate their eyes to research upon their death.  Eyes were collected at various medical sites around the country and sent to the Cleveland Clinic Cole Eye Institute ‘s Histopathology Laboratory funded by the Foundation and run by Dr. Joe Hollyfield, where they were banked (stored for long term use). Donated eyes were carefully characterized and retinal tissue samples were made available to the research community. 

Over the course of the program, more than 1,000 people who were either directly affected or related to someone who is affected, generously donated their eyes for investigators studying rare inherited retinal degenerative diseases and age-related macular degeneration.  The studies using these eyes have strongly supported the mission of the Foundation Fighting Blindness and contributed greatly to our scientific knowledge of the processes underlying these devastating diseases. 

More recently, the need for an eye donor program has decreased substantially.  New and more powerful imaging technologies now allow clinicians and scientists to monitor the progression of disease, in detail, over the life of an affected person.  This now provides us with information not only on the disease at the time of death, but information on how the disease progresses through a patient’s life.

The decision to close the program was made only after a thorough and independent review of the eye donor program and careful deliberation by the Foundation’s Research Oversight Committee.

The eyes donated to the program over the years will be kept and will continue to support research for those studies that still need access to these tissues.