Civic Intelligence

The Foundation Fighting Blindness Inc

990 • Fiscal year 2020 • EIN 23-7135845

Jul 01, 2019 to Jun 30, 2020 • Filed on Nov 06, 2020

Organization ProfileWWW.FIGHTINGBLINDNESS.ORG

View Organization Page

6925 Oakland Mills Road 701Columbia, MD 21045

(410) 423-0600

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

24th percentile

0.09x

Higher debt load relative to assets than 24% of similar nonprofits.

2020 filings • 501(c)3 • $100M-$250M nonprofits • Source year 2020

Liabilities / Revenue

40th percentile

0.40x

Higher debt load relative to revenue than 40% of similar nonprofits.

2020 filings • 501(c)3 • $100M-$250M nonprofits • Source year 2020

Net Margin

13th percentile

-16%

Higher net margin than 13% of similar nonprofits.

2020 filings • 501(c)3 • $100M-$250M nonprofits • Source year 2020

Top Officer Pay

58th percentile

$545,448

Higher top officer pay than 58% of similar nonprofits.

Top officer pay equals 1.5% of source-year revenue.

2020 filings • 501(c)3 • $100M-$250M nonprofits • Source year 2020

Asset Growth

12th percentile

-3.9%

Faster asset growth than 12% of similar nonprofits.

2020 filings • 501(c)3 • $100M-$250M nonprofits • Annualized from 2019 to 2020

Revenue Growth

9th percentile

-34%

Faster revenue growth than 9% of similar nonprofits.

2020 filings • 501(c)3 • $100M-$250M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets24th percentile

Assets

Down

$159,573,247

Down $6,520,051 (-3.9%) from 2019

Net Assets

Down

$145,559,173

Down $3,766,321 (-2.5%) from 2019

Liabilities

Down

$14,014,074

Down $2,753,730 (-16%) from 2019

Revenue And Expenses
Liabilities / Revenue40th percentileNet Margin13th percentile

Revenue

Down

$35,372,887

Down $17,996,323 (-34%) from 2019

Expenses

Up

$41,134,475

Up $7,210,447 (+21%) from 2019

Net Income

Down

-$5,761,588

Down $25,206,770 (-130%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth12th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$200M$150M$100M$50M$0Assets 2011: $46,755,869Liabilities 2011: $13,346,028Net Assets 2011: $33,409,8412011Assets 2012: $60,105,388Liabilities 2012: $17,120,795Net Assets 2012: $42,984,5932012Assets 2013: $73,618,451Liabilities 2013: $15,872,986Net Assets 2013: $57,745,4652013Assets 2014: $82,788,523Liabilities 2014: $12,524,827Net Assets 2014: $70,263,6962014Assets 2015: $111,781,122Liabilities 2015: $11,120,038Net Assets 2015: $100,661,0842015Assets 2016: $158,683,383Liabilities 2016: $15,180,623Net Assets 2016: $143,502,7602016Assets 2017: $154,220,569Liabilities 2017: $16,294,861Net Assets 2017: $137,925,7082017Assets 2018: $137,901,875Liabilities 2018: $10,783,026Net Assets 2018: $127,118,8492018Assets 2019: $166,093,298Liabilities 2019: $16,767,804Net Assets 2019: $149,325,4942019Assets 2020: $159,573,247Liabilities 2020: $14,014,074Net Assets 2020: $145,559,1732020Assets 2021: $155,616,058Liabilities 2021: $21,019,889Net Assets 2021: $134,596,1692021Assets 2022: $145,877,854Liabilities 2022: $24,415,527Net Assets 2022: $121,462,3272022Assets 2023: $130,891,355Liabilities 2023: $30,670,536Net Assets 2023: $100,220,8192023Assets 2024: $124,009,134Liabilities 2024: $31,398,627Net Assets 2024: $92,610,5072024Assets 2025: $110,885,645Liabilities 2025: $27,016,811Net Assets 2025: $83,868,8342025

Highlighted filing

2020

Assets$159,573,247
Liabilities$14,014,074
Net Assets$145,559,173
Open 2020 Filing

Operations Trend

Revenue Growth9th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$100M$50M$0-$50MExpenses 2011: $25,992,4722011Expenses 2012: $29,725,3622012Expenses 2013: $25,953,5762013Revenue 2014: $38,346,263Expenses 2014: $25,828,393Net Income 2014: $12,517,8702014Revenue 2015: $56,426,497Expenses 2015: $27,822,077Net Income 2015: $28,604,4202015Revenue 2016: $71,894,445Expenses 2016: $28,566,915Net Income 2016: $43,327,5302016Revenue 2017: $24,590,184Expenses 2017: $28,675,325Net Income 2017: -$4,085,1412017Revenue 2018: $24,964,671Expenses 2018: $33,997,453Net Income 2018: -$9,032,7822018Revenue 2019: $53,369,210Expenses 2019: $33,924,028Net Income 2019: $19,445,1822019Revenue 2020: $35,372,887Expenses 2020: $41,134,475Net Income 2020: -$5,761,5882020Revenue 2021: $29,791,479Expenses 2021: $40,728,225Net Income 2021: -$10,936,7462021Revenue 2022: $42,887,836Expenses 2022: $49,175,609Net Income 2022: -$6,287,7732022Revenue 2023: $30,437,892Expenses 2023: $51,265,440Net Income 2023: -$20,827,5482023Revenue 2024: $35,702,558Expenses 2024: $48,226,411Net Income 2024: -$12,523,8532024Revenue 2025: $36,615,169Expenses 2025: $49,532,382Net Income 2025: -$12,917,2132025

Highlighted filing

2020

Revenue$35,372,887
Expenses$41,134,475
Net Income-$5,761,588
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2019 to Jun 30, 2020
Signed
Nov 6, 2020
Return Version
2019v5.1
Gross Receipts
$93,168,667
Mission and Program Overview

Mission

The mission of the foundation fighting blindness, inc. (foundation) 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.

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$83,927,791$86,180,174▲ $2,252,383
Pledges and Grants Receivable$26,254,801$28,415,543▲ $2,160,742
Savings and Temporary Cash Investments$42,857,611$25,363,837▼ $17,493,774
Cash and Non-Interest-Bearing Accounts$1,763,158$8,753,237▲ $6,990,079
Land, Buildings, and Equipment, Net$1,329,279$1,153,839▼ $175,440
Prepaid Expenses and Deferred Charges$916,253$1,012,101▲ $95,848
Accounts Receivable$743,629$550,430▼ $193,199
Other Notes and Loans Receivable, Net$500,000$500,000→ $0
Total Assets$166,093,298$159,573,247▼ $6,520,051
Other Assets Total$7,800,776$7,644,086▼ $156,690
Liabilities
Grants Payable$13,980,632$10,904,636▼ $3,075,996
Accounts Payable and Accrued Expenses$1,542,226$1,293,010▼ $249,216
Unsecured Notes Loans Payable-$1,062,123-
Other Liabilities$928,589$736,855▼ $191,734
Deferred Revenue$316,357$17,450▼ $298,907
Total Liabilities$16,767,804$14,014,074▼ $2,753,730
Net Assets / Fund Balance
Net Assets With Donor Restrictions$112,919,962$111,927,721▼ $992,241
Net Assets Without Donor Restrictions$36,405,532$33,631,452▼ $2,774,080
Total Net Assets Fund Balance$149,325,494$145,559,173▼ $3,766,321
Total Liabilities and Net Assets / Fund Balance$166,093,298$159,573,247▼ $6,520,051

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$795,902$2,781,528$3,577,430
Equipment$309,540$995,094$1,304,634
Leasehold Improvements$48,397$796,944$845,341

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2019$3,381,828-▲ $137,702-$3,422,374
2018$3,256,748-▲ $208,731-$3,381,828
2017$3,256,748-▲ $11,279-$3,256,748
2016$3,190,000$66,748▲ $17,173-$3,256,748
2015$500,000$2,690,000▲ $23,270-$3,190,000
Compensation and Service Providers
Top Officer Pay58th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Benjamin R YerxaCEOPT$347,340$116,291$463,631
Jason D MenzoCOOFT$321,916$94,845$416,761
Brian MansfieldExec VP, Research & Interim CSOFT$228,184$66,467$294,651
Stephen Mark RoseSr. Scientific Advisor (thru 6/1/20)FT$214,788$69,677$284,465
Hope KesslerSr. Director, Major Gifts (thru 3/24/20)FT$254,467$26,965$281,432
Hope KesslerSr. Director, Major Gifts (thru 3/24-$235,181$46,251$281,432
Patricia DudleyChief Human Resource OfficerFT$151,681$128,554$280,235
Todd a DurhamVP, Clinical & Outcomes ResearchFT$197,261$31,947$229,208
Nancy M DavenportVP, FinanceFT$165,532$25,094$190,626
Annette M HinkleFormer CFO-$182,449$182,449$182,449
Christopher S AdamsVP, Communications & MarketingFT$136,584$37,042$173,626
Michele C DivincenzoVP, EventsFT$127,118$37,005$164,123
Michele O MercerSr. Director, Database OperationsFT$120,525$43,218$163,743
John R CorneilleDirector, Gift PlanningFT$123,280$19,673$142,953
William Thomas SchmidtFormer CEO-$131,800$131,800$131,800

Board Members and Trustees

NameTitle
David BrintChairman
Gordon GundDirector - Chairman Emeritus
Warren ThalerVice Chairman, Board Dev & Comm
Edward RussnowVice Chairman, Development
Joel DavisVice Chairman, Major Gifts
Jonathan Steinberg MdVice Chairman, Research
Adrienne GravesDirector
Bradford ManningDirector
Darren DevoueDirector
Evan MittmanDirector
Janni Lehrer-steinDirector
Jason FerreiraDirector
Jason MorrisDirector
Karen PetrouDirector
Laura ManfreDirector
Maryrose SylvesterDirector
Robert HeidenbergDirector
Scott BurtDirector
Steven AlperDirector
William CartyDirector
Yvonne ChesterSecretary
Haynes LeaTreasurer
Russell W KelleyVP, Investments & Alliances

Highest Paid Contractors

ContractorServicesLocationCompensation
Aileron Consulting LLCSoftware Integration Consultant2111 WILSON BLVD SUITE 700, Arlington, VA 22202$382,845
Mindset Direct LLCDirect Marketing Consultant12355 SUNRISE VALLEY DRIVE SUITE 2, Reston, VA 20191$352,179
Contemporary Productions LLCEntertainment For Fundraising Event190 CARONDELET PLAZA SUITE 1111, St Louis, MO 63105$238,000
Nne MarketingDirect Marketing Consultant1666 MASSACHUSETTS AVENUE SUITE 14, Lexington, MA 02420$192,000
BlackbaudOn Line Fundraising Software FeesPO BOX 930256, Atlanta, GA 31193-0256$190,838
Revenue and Support

Revenue Composition

Contributions and Grants
$31,895,116
Program Service Revenue
$239,962
Investment Income
$3,378,679
Other Revenue
$-140,870
All Other Contributions
$26,201,460
Change in Net Assets
$-5,761,588

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
Yes

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded44$358,959Fair Market
Other Non Cash Contri Table489$202,566Fair Market Value
Total Noncash Contributions533$561,525-

Audited Revenue Reconciliation

Revenue per Audited Statements
$23,032,674
Revenue Not Reported on Financial Statements
$12,340,213
Revenue Not Reported on Form 990
$11,706,282
Other Revenue Adjustments
$12,039,089
Total Revenue per Audited Statements
$34,738,956
Total Revenue per Form 990
$35,372,887
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$21,163,616
Other Expenses$12,030,764
Salaries, Compensation, and Employee Benefits$7,253,730
Total Fundraising Expense$7,235,289
Professional Fundraising Fees$686,365

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$18,162,797--$18,162,797
Other Salaries and Wages$1,058,044$335,870$2,648,855$4,042,769
Foreign Grants$3,000,819--$3,000,819
Fees for Services Management$947,140$212,034$766,564$1,925,738
Current Officers, Directors, Trustees, and Key Employees$884,123$486,060$537,010$1,907,193
Occupancy$146,117$128,094$438,256$712,467
Fees for Services Professional Fundraising--$686,365$686,365
Other Employee Benefits$160,247$99,154$368,005$627,406
Conferences and Meetings$152,056$108,177$177,761$437,994
Payroll Taxes$126,301$55,276$226,496$408,073
Office Expenses$76,168$93,248$226,932$396,348
Information Technology$13,395$61,757$278,693$353,845
Depreciation Depletion$143,758$30,993$178,651$353,402
Fees for Service Investment Mgmnt Fees-$301,124$24,505$325,629
Other Expenses$85,593$18,079$183,418$287,090
All Other Expenses$34,706$147,217$101,151$283,074
Pension Plan Contributions$86,591$38,112$143,586$268,289
Insurance$132,160$24,039$92,030$248,229
Travel$81,435$34,924$130,375$246,734
Advertising$98,661$1,448$23,260$123,369
Fees for Services Accounting-$47,050$2,363$49,413
Fees for Services Legal-$7,650$1,013$8,663
Total Functional Expenses$31,668,880$2,230,306$7,235,289$41,134,475

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Form 990$41,134,475
Total Expenses per Audited Statements$31,832,746
Expenses per Audited Statements$28,794,262
Expenses Not Reported on Financial Statements$12,340,213
Other Expense Adjustments$12,039,089
Expenses Not Reported on Form 990$3,038,484
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Foundation Fighting Blindness Rd FundColumbia, MD501(c)(3)Research$11,939,089
Massachusetts Eye and Ear InfirmaryBoston, MA501(c)(3)Research$775,000
University HospitalsDetroit, MI501(c)(3)Research$768,554
University of California San DiegoLa Jolla, CA501(c)(3)Research$575,000
University California San FranciscoLos Angeles, CA501(c)(3)Research$498,409
Columbia UniversityNew York, NY501(c)(3)Research$496,691
Oregon Health and Science UniversityPortland, OR501(c)(3)Research$398,593
University of PennsylvaniaPhiladelphia, PA501(c)(3)Research$354,541
University of FloridaGainesville, FL501(c)(3)Research$300,000
Johns Hopkins UniversityBaltimore, MD501(c)(3)Research$275,000
University of WisconsinMadison, WI501(c)(3)Research$259,200
University of WashingtonSeattle, WA501(c)(3)Research$196,127
Regents Univ of CaliforniaLos Angeles, CA501(c)(3)Research$180,615
University of LouisvilleLouisville, KY501(c)(3)Research$170,752
Univ of Nc Chapel HillChapel Hill, NC501(c)(3)Research$105,000
Duke University Medical CenterDurham, NC501(c)(3)Research$100,000
Molecular Insight Research FoundationLos Angeles, CA501(c)(3)Research$100,000
Retina Foundation of the SouthwestDallas, TX501(c)(3)Research$100,000
University of California BerkeleyBerkeley, CA501(c)(3)Research$100,000
University of IowaIowa City, IA501(c)(3)Research$100,000
University of PittsburghPittsburgh, PA501(c)(3)Research$100,000
University of UtahSalt Lake City, UT501(c)(3)Research$100,000
Marquette UniversityMilwauke, WI501(c)(3)Research$95,226
Emory UniversityAtlanta, GA501(c)(3)Research$75,000

International Summary

Offices
0
Employees
0
Spending
$3,015,030

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (including Iceland & Greenland)GrantmakingProgram Related Travel00$2,575,819
Middle East and North AfricaGrantmaking-00$200,000
North AmericaGrantmaking-00$150,000
East Asia and the PacificGrantmaking-00$75,000
Europe (including Iceland & Greenland)Program Service-00$14,211
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
Yes

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$686,365
Fundraising Direct Expenses$561,197
Fundraising Gross Income$258,089

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Ny Vision for Future$263,393$55,000-$55,000
St. Louis Dinner$483,435$51,660$4,000$47,660
Total Events$5,795,142$258,089$561,197$-303,108
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Charitable Gift Annuity Obligation$687,817
Deferred Rent$49,038
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 6

“Members of ffb are known as national trustees. The qualifications and eligibility for membership and the manner of admission into membership is prescribed by resolution of the board of directors. The national trustees are entitled to vote on election of directors.”

Form 990, Part VI, Section A, Line 7A

“During the annual meeting of the national trustees, members of the board of directors are elected.”

Form 990, Part VI, Section B, Line 11B

“Data to prepare the federal form 990 is provided to our outside accounting firm for preparation and guidance. After it has been completed, a draft of the federal form 990 is reviewed by the vp of finance and chief operating officer. With the vp of finance's approval, the draft federal form 990 is then made available to all board members. All board members are invited to attend a special meeting of the finance committee to review the federal form 990. A final draft is made available to all board members before filing.”

Form 990, Part VI, Section B, Line 12C

“In connection with any actual or possible conflict of interest, an interested person (including officers, directors, and key employees) must disclose, in writing prior to any discussion or vote upon a proposal, the existence and nature of his or her personal interest to the chair of the board and chair of the board committee considering the proposed transaction or arrangement. After disclosure of the financial interest and all material facts, the interested person shall leave the board or committee meeting while the financial interest is discussed and voted upon. The remaining board shall decide if a conflict of interest exists, and if so, whether there is a compelling reason to recommend to the board that the conflict of interest policy be overridden. A quorum is needed for voting and the vote to override shall be by majority and duly noted in the minutes.”

Form 990, Part VI, Section B, Line 15

“The compensation committee and the board of directors approves the compensation of the chief executive officer. The compensation committee approves the compensation of the other chief officers. On a routine basis, external data provided by outside expert compensation consultants is used to measure reasonableness of salaries to the market place and results are communicated by outside consultants to the board chair/compensation committee.”

Form 990, Part VI, Section C, Line 19

“Ffb's federal form 990 and consolidated audited financial statements are available at www.fightblindness.org. Other public documents including the conflict of interest policy are available upon request through the contact information disclosed on ffb's web site. These documents are available for the same period of disclosure as set forth in section 6104(d).”

FORM 990, PART VII, SECTION A:

“Ffb acts as the common paymaster for the foundation fighting blindness retinal degeneration fund, a related organization.”

Filing and Contact Details

Filer

Filer Name
The Foundation Fighting Blindness Inc
EIN
23-7135845
Phone
4104230600
Address
6925 OAKLAND MILLS ROAD 701, COLUMBIA, MD 21045

Signing Officer

Name
Jason Menzo
Title
COO
Phone
4104230600
Signed
2020-11-06
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Benjamin Yerxa
Formed
1971
Legal Domicile
Md
Voting Board Members
22
Independent Board Members
22
Employees
73
Volunteers
2,500

Preparer

Firm
Rsm US Llp
Address
100 INTERNATIONAL DRIVE SUITE 1400, BALTIMORE, MD 21202
Preparer
Julia Flannery CPA
Phone
4102469301
Supplemental Narrative

Additional Explanations

FORM 990, PART XI, LINE 9:

“GRANT REFUNDS 90,788.”

Financial Statement Notes

PART V, LINE 4:

“Earnings can be used for operations; principal is donor restricted.”

PART X, LINE 2:

“The foundation performed an evaluation of its uncertainty in income tax for the years ended june 30, 2020 and 2019, and determined that there were no matters that would require recognition in the consolidated financial statements or that may have any effect on its tax-exempt status. The foundation follows the accounting standard on accounting for uncertainty in income taxes, which addresses the determination of whether tax benefits claimed or expected to be claimed on a tax return should be recorded in the consolidated financial statements. Under this policy, the foundation may recognize the tax benefit from an uncertain tax position only if it is more likely than not that the tax position would be sustained on examination by taxing authorities, based on the technical merits of the position. Management has evaluated the foundation's tax positions and has concluded that the foundation has taken no uncertain tax positions that require adjustment to the financial statements to comply with provisions of this guidance. The foundation is no longer subject to income tax examinations for the u.s. Federal, state or local tax authorities for years before june 30, 2017.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Revenue from affiliate included on consolidated financial statements 9,791,483.”

PART XI, LINE 4B - OTHER ADJUSTMENTS:

“Elimination entry included on financial statements 12,039,089.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Expenses from affiliate included on consolidated financial statements 3,118,952. Grant refunds -90,788.”

PART XII, LINE 4B - OTHER ADJUSTMENTS:

“Elimination entry included on financial statements 12,039,089.”

Raw XML AppendixShowing 400 of 1,666 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/ActivityOrMissionDesc0THE 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.
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IRS990/Desc0RESEARCH: THE FOUNDATION FIGHTING BLINDNESS, INC. (THE FOUNDATION) 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. THE FOUNDATION HAS ENCUMBRANCES OF $41.9 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 2020, THE FOUNDATION'S RESEARCH GRANTS PROGRAM IS FUNDING 82 GRANTS BEING CONDUCTED BY MORE THAN 90 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.HOMOLOGY-INDEPENDENT GENOME EDITING FOR TREATMENT OF STARGARDT DISEASEIVANA TRAPANI, PHD, UNIVERSITA DEGLI STUDI DI NAPOLI "FEDERICO II" NAPLES, ITALYGENE THERAPY DEVELOPMENT FOR STARGARDT DISEASE IS CHALLENGING BECAUSE ABCA4, THE MUTATED GENE CAUSING STARGARDT DISEASE, IS TOO LARGE FOR MOST VIRAL DELIVERY SYSTEMS. DR. TRAPANI IS EVALUATING A HIGHLY EFFICIENT CRISPR/CAS9 GENE-EDITING TECHNOLOGY - HOMOLOGY INDEPENDENT TARGETED INSERTION (HITI) - TO ADDRESS MUTATIONS IN ABCA4. HER EARLY PROOF-OF-CONCEPT STUDIES ARE BEING PERFORMED IN A STARGARDT DISEASE MOUSE MODEL AND A THREE-DIMENSIONAL RETINAL ORGANOID IN A DISH.ADAR-BASED RNA EDITING AS A POTENTIAL THERAPY FOR INHERITED RETINAL DEGENERATIONSDROR SHARON, PHD, HADASSAH-HEBREW UNIVERSITY MEDICAL CENTERMANY EMERGING THERAPIES TARGET MUTATIONS IN OUR GENES - OUR DNA. DR. SHARON IS INVESTIGATING A NEW TOOL FOR EDITING RNA - THE GENETIC MESSAGES DERIVED FROM DNA WHICH ARE USED BY OUR CELLS TO PRODUCE PROTEINS. KNOWN AS "INTRINSIC ADENOSINE DEAMINASE ACTING ON RNA, OR ADAR, THE TECHNOLOGY SPECIFICALLY ADDRESSES G-TO-A MUTATIONS. DR. SHARON BELIEVES THAT ABOUT 30 PERCENT OF THE MOST COMMONLY REPORTED IRD-CAUSING MUTATIONS CAN BE TARGETED FOR ADAR EDITING (MAINLY IN RELATIVELY LARGE GENES SUCH AS ABCA4 AND USH2A). HIS LAB IS EVALUATING THE TECHNOLOGY IN CELLS AND MOUSE MODELS OF RETINAL DISEASE.PRIME EDITING FOR USHER SYNDROME TYPE 2ABENCE GYORGY, MD, PHD, INSTITUTE OF MOLECULAR AND CLINICAL OPHTHALMOLOGY BASELDR. GYORGY IS DEVELOPING A GENE CORRECTION STRATEGY KNOWN AS PRIME EDITING, A NOVEL TECHNOLOGY THAT IS IN SOME WAYS SIMILAR TO GENE EDITING WITH CRISPR/CAS9, BUT POTENTIALLY MORE PRECISE AND EFFICIENT. INSTEAD OF CUTTING THE DOUBLE STRANDS OF DNA, IT NICKS THE DNA, WHICH MAY BE A PREFERRED APPROACH TO CORRECTING SINGLE-LETTER MUTATIONS. DR. GYORGY IS DEVELOPING A PRIME EDITING TREATMENT TO INSERT THE MISSING G NUCLEOTIDE INTO RETINAL CELLS WITH THE RELATIVELY COMMON USH2A MUTATION DEL2299G. IN ORDER TO FACILITATE TRANSLATION OF THIS CONCEPT TO THE CLINIC, HE WILL EVALUATE THE THERAPY IN HUMAN RETINAL EXPLANTS, HUMAN ENGINEERED RETINAL ORGANOIDS AND HUMANIZED MOUSE MODELS. IF THE APPROACH IS SUCCESSFUL, IT MAY BE APPLIED TO OTHER MUTATIONS AND IRDS.CREATION OF NEW MODELS OF INHERITED RETINAL DISEASE IN PIGSMAUREEN MCCALL, PHD, UNIVERSITY OF LOUISVILLETHOUGH RODENTS ARE OFTEN USED AS MODELS FOR INHERITED RETINAL DISEASES (IRDS), THEY ARE LIMITED IN RECAPITULATING HUMAN IRDS BECAUSE THEY DON'T HAVE CONES, THE RETINAL CELLS THAT ENABLE HUMANS TO PERCEIVE DETAILS AND COLORS AND SEE IN LIGHTED SETTINGS. PIGS DO HAVE CONES AND ARE EASY TO ENGINEER TO MODEL IRDS IN HUMANS. DR. MCCALL IS CREATING A SLOW DEGENERATION PIG MODEL OF RP (RHO-P23H) AS WELL AS A PIG MODEL OF STARGARDT DISEASE. THE MODELS WILL BE USEFUL FOR EVALUATING EMERGING THERAPIES IN PREPARATION FOR CLINICAL TRIALS.GENERATION AND CHARACTERIZATION OF A PIG MODEL OF RETINITIS PIGMENTOSA (EYS MUTATION)HEMANT KHANNA, PHD, UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOLMUTATIONS IN THE EYS GENE ARE THE SECOND MOST COMMON CAUSE OF AUTOSOMAL RECESSIVE RP IN HUMANS.
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IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt360
IRS990/Form990PartVIISectionAGrp/TitleTxt0CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE CHAIRMAN, MAJOR GIFTS
IRS990/Form990PartVIISectionAGrp/TitleTxt2VICE CHAIRMAN, DEVELOPMENT
IRS990/Form990PartVIISectionAGrp/TitleTxt3VICE CHAIRMAN, RESEARCH
IRS990/Form990PartVIISectionAGrp/TitleTxt4VICE CHAIRMAN, BOARD DEV & COMM
IRS990/Form990PartVIISectionAGrp/TitleTxt5TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt6SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt7DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt8DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt9DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt11DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt12DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt13DIRECTOR - CHAIRMAN EMERITUS
IRS990/Form990PartVIISectionAGrp/TitleTxt14DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt15DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt16DIRECTOR

Document Assets

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Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$159,573,247
Liabilities
$14,014,074
Net assets
$145,559,173
Revenue
$35,372,887
Expenses
$41,134,475
Net income
-$5,761,588
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$111$27.0$83.9$36.6$49.5$12.9
2024Detailed filing. Detailed filing data is available for this year.$124$31.4$92.6$35.7$48.2$12.5
2023Detailed filing. Detailed filing data is available for this year.$131$30.7$100$30.4$51.3$20.8
2022Detailed filing. Detailed filing data is available for this year.$146$24.4$121$42.9$49.2$6.29
2021Detailed filing. Detailed filing data is available for this year.$156$21.0$135$29.8$40.7$10.9
2020Detailed filing. Detailed filing data is available for this year.$160$14.0$146$35.4$41.1$5.76
2019Detailed filing. Detailed filing data is available for this year.$166$16.8$149$53.4$33.9$19.4
2018Detailed filing. Detailed filing data is available for this year.$138$10.8$127$25.0$34.0$9.03
2017Detailed filing. Detailed filing data is available for this year.$154$16.3$138$24.6$28.7$4.09
2016Detailed filing. Detailed filing data is available for this year.$159$15.2$144$71.9$28.6$43.3
2015Detailed filing. Detailed filing data is available for this year.$112$11.1$101$56.4$27.8$28.6
2014Detailed filing. Detailed filing data is available for this year.$82.8$12.5$70.3$38.3$25.8$12.5
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$73.6$15.9$57.7$26.0
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$60.1$17.1$43.0$29.7
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$46.8$13.3$33.4$26.0
Peer Organizations

Similar nonprofits based on the same Siviq industry and scale cohort. 2020 filings • 501(c)3 • $100M-$250M nonprofits