Foundation Fighting Blindness, Inc.
Foundation Fighting Blindness, Inc.
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About this organization
Mission
The urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, age-related macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. The Foundation is a beacon for those affected by these blinding diseases. Join the fight and help us accelerate our mission. Today, the Foundation is the world’s leading private source for inherited retinal disease research funding. FFB is committed to driving research until the entire spectrum of retinal degenerative diseases is eradicated.
About
RESEARCH: THE FOUNDATION FIGHTING BLINDNESS, INC. (FFB) FUNDED RESEARCHERS ARE ACHIEVING REMARKABLE SUCCESS IN DISCOVERING, TESTING AND DELIVERING TO PATIENTS A WIDE RANGE OF PROMISING THERAPIES TO PREVENT, STOP THE PROGRESSION, OF, AND CURE BLINDNESS DUE TO RETINAL DEGENERATIVE DISEASES. FFB HAS ENCUMBRANCES OF $35.4 MILLION, NOT INCLUDED ON OUR JUNE 30 FINANCIAL REPORT, FOR ACTIVE RESEARCH PROJECTS THAT HAVE FUTURE RESEARCH MILESTONES. OUR RESEARCH OVERSIGHT COMMITTEE'S SPENDING PLAN INCLUDES SPENDING AT AN AVERAGE OF $21 MILLION ANNUALLY TO SUPPORT FUTURE RESEARCH.AS OF THE END OF OUR FISCAL YEAR 2019, FFB'S RESEARCH GRANTS PROGRAM IS FUNDING 66 GRANTS BEING CONDUCTED BY MORE THAN 110 INVESTIGATORS AT 67 INSTITUTIONS, EYE HOSPITALS AND UNIVERSITIES IN THE U.S. AND AROUND THE WORLD. A SAMPLING OF THE RESEARCH PROJECTS FUNDED ARE LISTED BELOW.RADHA AYYAGARI, PH.D, FFB-FUNDED RESEARCHER AT THE UNIVERSITY OF CALIFORNIA, SAN DIEGO, AND HER TEAM ARE LOOKING FOR ULTRA-RARE INHERITED RETINAL DEGENERATION GENES YET TO BE DISCOVERED, AS WELL AS PREVIOUSLY UNDISCOVERED DEFECTS IN KNOWN GENES. TODAY, ABOUT 65-70 PERCENT OF INHERITED RETINAL DEGENERATION PATIENTS WILL HAVE THEIR MUTATED GENE IDENTIFIED WHEN GETTING TESTED. HOWEVER, IT ALSO MEANS THAT THE GENE MUTATIONS FOR ABOUT ONE-THIRD OF PATIENTS ARE STILL NOT IDENTIFIED. DR. AYYAGARI'S RESEARCH IS CLOSING THIS GAP WITH THE IDENTIFICATION OF 'ELUSIVE OR HARD-TO-FIND GENES.RACHEL HUCKFELDT, M.D., PH.D., FFB-FUNDED EARLY-CAREER CLINICIAN SCIENTIST AT MASSACHUSETTS EYE AND EAR, IS INVESTIGATING CYSTOID MACULAR EDEMA (CME), A COMMON, VISION-ROBBING COMPLICATION OF RETINITIS PIGMENTOSA AND OTHER INHERITED RETINAL DISEASES. DR. HUCKFELDT WILL BE WORKING TO BETTER UNDERSTAND WHAT CAUSES THE POTENTIALLY HARMFUL COLLECTION OF FLUID ASSOCIATED WITH CME, AS WELL AS BETTER WAYS TO TREAT IT.OPTOGENETIC THERAPIES BESTOW LIGHT-SENSITIVITY (VISUAL FUNCTION) TO SURVIVING RETINAL CELLS AFTER PHOTORECEPTORS ARE LOST TO ADVANCED RETINAL DISEASES SUCH AS RETINITIS PIGMENTOSA, USHER SYNDROME, AND AGE-RELATED MACULAR DEGENERATION. HOWEVER, MANY CURRENT OPTOGENETIC THERAPIES IN DEVELOPMENT HAVE LIMITED LIGHT SENSITIVITY AND WILL ONLY WORK IN VERY BRIGHT SETTINGS. JOHN FLANNERY, PH.D., FFB-FUNDED RESEARCHER AT THE UNIVERSITY OF CALIFORNIA, BERKELEY, IS DEVELOPING OPTOGENETIC APPROACHES THAT WILL WORK IN A BROADER SPECTRUM OF LIGHTING CONDITIONS AND POTENTIALLY PROVIDE BETTER PERCEPTION OF DETAILS THAN OTHER OPTOGENETIC ALTERNATIVES IN CLINICAL TRIALS. THE START-UP COMPANY, VEDERE HAS BEEN FORMED TO ADVANCE THE TREATMENT INTO A CLINICAL TRIAL AND OUT TO THE MARKETPLACE.
Interesting data from their 2020 990 filing
The filing sets forth the mission of the non-profit as “The mission of the foundation fighting blindness, inc. (ffb) is to drive the research that will provide preventions, treatments and cures, for people affected by retinitis pigmentosa, macular degeneration, usher syndrome, and the spectrum of retinal degenerative diseases.”.
When detailing its responsibilities, they were listed as: “The urgent mission of the foundation fighting blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, age-related macular degeneration, usher syndrome and the entire spectrum of retinal degenerative diseases. the foundation is a beacon for those affected by these blinding diseases.”.
- The state in which the non-profit is legally permitted to operate is MD.
- The address of the non-profit for 2020 according to the filing is 7168 COLUMBIA GATEWAY DRIVE NO 100, COLUMBIA, MD, 21046.
- The number of employees reported by the non-profit on their form as of 2020 is 78.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $19,445,182.
- The organization has 18 independent voting members.
- The organization was formed in 1971.
- The organization pays $6,586,135 in salary, compensation, and benefits to its employees.
- The organization pays $7,079,653 in fundraising expenses.
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