Civic Intelligence

Coalition for Usher Syndrome Research

990 • Fiscal year 2023 • EIN 26-4560897

Jan 01, 2023 to Dec 31, 2023 • Filed on Nov 15, 2024

Organization Profilewww.usher-syndrome.org
9 Cornerstone Square STE 400-224Westford, MA 01886

(800) 946-9203

Siviq Scores

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

Liabilities / Assets

64th percentile

0.01x

Higher debt load relative to assets than 64% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Liabilities / Revenue

65th percentile

0.01x

Higher debt load relative to revenue than 65% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Net Margin

24th percentile

-14%

Higher net margin than 24% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Top Officer Pay

96th percentile

$72,497

Higher top officer pay than 96% of similar nonprofits.

Top officer pay equals 29.0% of source-year revenue.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Asset Growth

26th percentile

-16%

Faster asset growth than 26% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Annualized from 2022 to 2023

Revenue Growth

11th percentile

-50%

Faster revenue growth than 11% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Annualized from 2022 to 2023

Balance Sheet
Liabilities / Assets64th percentile

Assets

Down

$240,348

Down $46,637 (-16%) from 2022

Net Assets

Down

$238,761

Down $44,460 (-16%) from 2022

Liabilities

Down

$1,587

Down $2,177 (-58%) from 2022

Revenue And Expenses
Liabilities / Revenue65th percentileNet Margin24th percentile

Revenue

Down

$250,204

Down $252,679 (-50%) from 2022

Expenses

Down

$284,874

Down $130,877 (-31%) from 2022

Net Income

Down

-$34,670

Down $121,802 (-140%) from 2022

Historical Trend

Balance Sheet Trend

Asset Growth26th percentile

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

$300K$200K$100K$0Assets 2010: $25,000Liabilities 2010: $0Net Assets 2010: $25,0002010Assets 2011: $35,095Liabilities 2011: $0Net Assets 2011: $35,0952011Assets 2012: $194,537Liabilities 2012: $0Net Assets 2012: $194,5372012Assets 2013: $118,015Liabilities 2013: $2,737Net Assets 2013: $115,2782013Assets 2014: $87,419Liabilities 2014: $1,130Net Assets 2014: $86,2892014Assets 2016: $164,922Liabilities 2016: $1,484Net Assets 2016: $163,4382016Assets 2017: $120,146Liabilities 2017: $12,153Net Assets 2017: $107,9932017Assets 2018: $125,293Liabilities 2018: $929Net Assets 2018: $124,3642018Assets 2019: $135,663Liabilities 2019: $1,060Net Assets 2019: $134,6032019Assets 2021: $197,279Liabilities 2021: $1,190Net Assets 2021: $196,0892021Assets 2022: $286,985Liabilities 2022: $3,764Net Assets 2022: $283,2212022Assets 2023: $240,348Liabilities 2023: $1,587Net Assets 2023: $238,7612023Assets 2024: $188,331Liabilities 2024: $8,002Net Assets 2024: $180,3292024

Highlighted filing

2023

Assets$240,348
Liabilities$1,587
Net Assets$238,761
Open 2023 Filing

Operations Trend

Revenue Growth11th percentile

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

$600K$400K$200K$0-$200KRevenue 2010: $25,000Expenses 2010: $0Net Income 2010: $25,0002010Revenue 2011: $14,262Expenses 2011: $4,167Net Income 2011: $10,0952011Expenses 2012: $24,7562012Revenue 2013: $15,154Expenses 2013: $94,413Net Income 2013: -$79,2592013Revenue 2014: $103,895Expenses 2014: $132,884Net Income 2014: -$28,9892014Revenue 2016: $278,702Expenses 2016: $244,596Net Income 2016: $34,1062016Revenue 2017: $234,881Expenses 2017: $290,326Net Income 2017: -$55,4452017Revenue 2018: $199,273Expenses 2018: $182,902Net Income 2018: $16,3712018Revenue 2019: $280,060Expenses 2019: $269,821Net Income 2019: $10,2392019Revenue 2021: $189,377Expenses 2021: $191,898Net Income 2021: -$2,5212021Revenue 2022: $502,883Expenses 2022: $415,751Net Income 2022: $87,1322022Revenue 2023: $250,204Expenses 2023: $284,874Net Income 2023: -$34,6702023Revenue 2024: $378,430Expenses 2024: $436,862Net Income 2024: -$58,4322024

Highlighted filing

2023

Revenue$250,204
Expenses$284,874
Net Income-$34,670
Open 2023 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2023 to Dec 31, 2023
Signed
Nov 15, 2024
Return Version
2023v5.1
Gross Receipts
$250,204
Mission and Program Overview

Mission

Raise awareness and accelerate research for the most common cause of combined deafness and blindness. Provide information and support to individuals and families affected by usher syndrome.

To raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness, while providing information and support to individuals with Usher syndrome.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$253,348$219,543▼ $33,805
Savings and Temporary Cash Investments$20,803$20,805▲ $2
Accounts Receivable$9,850--
Prepaid Expenses and Deferred Charges$2,984--
Total Assets$286,985$240,348▼ $46,637
Liabilities
Accounts Payable and Accrued Expenses$3,764$1,587▼ $2,177
Total Liabilities$3,764$1,587▼ $2,177
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$283,221$238,761▼ $44,460
Total Net Assets Fund Balance$283,221$238,761▼ $44,460
Total Liabilities and Net Assets / Fund Balance$286,985$240,348▼ $46,637
Compensation and Service Providers
Top Officer Pay96th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Krista VasiExecutive DirectorFT$72,497$72,497

Board Members and Trustees

NameTitle
Lanya McKittrick PhDPresident
Danay TrestDirector
David AlexanderDirector
Eric Wagner PhDDirector
Jennifer J Lentz PhDDirector
Kathy AnamisisDirector
Margaret Kenna MD MPHDirector
Monte Westerfield PhDDirector
Nancy CordermanDirector
Steven McCoyDirector
Tara BowmanSecretary
Steve MasonTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$221,199
Program Service Revenue
$29,003
Investment Income
$2
Other Revenue
$0
All Other Contributions
$221,199
Change in Net Assets
$-34,670
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$202,658
Other Expenses$82,216
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$91,803$18,786-$110,589
Current Officers, Directors, Trustees, and Key Employees$59,885$12,612-$72,497
Fees for Services Other$20,440--$20,440
Payroll Taxes$12,261$2,121-$14,382
Fees for Services Accounting-$8,607-$8,607
Travel$6,847$1,319-$8,166
Other Employee Benefits-$5,190-$5,190
Insurance-$4,307-$4,307
Information Technology$2,152$480-$2,632
Office Expenses$1,372$1,110-$2,482
Fees for Services Management-$1,575-$1,575
Occupancy-$932-$932
Other Expenses$254--$254
Advertising$95--$95
Total Functional Expenses$227,835$57,039$0$284,874
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
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
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

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

“The organization reviews the 990 form at a board meeting prior to submitting to the IRS.”

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

“The organization enforced compliance with its conflict of interest policy by reviewing it periodically at board meetings.”

Form 990, Part VI, Section C, Line 19

“The organization makes its governing documents, conflict of interest policy, and financial statements available to the public upon request.”

Form 990, Part VI, Section B, Line 15A

“The organization uses the following methods to establish compensation packages for its employees IRS Form 990 of similar organizations written employee contract and approval by the board.”

Filing and Contact Details

Filer

Filer Name
Coalition For Usher Syndrome Research
EIN
26-4560897
Phone
8009469203
Address
9 Cornerstone Square STE 400-224, Westford, MA 01886

Signing Officer

Name
Krista Vasi
Title
Executive Director
Phone
8009469203
Signed
2024-11-15
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Lanya McKittrick
Formed
2009
Legal Domicile
Ma
Voting Board Members
12
Independent Board Members
12
Employees
3
Volunteers
100

Preparer

Firm
Foundation Group Inc
Address
2451 Atrium Way Suite 300, Nashville, TN 37214
Preparer
Shannon M Evans EA
Phone
6153619445
Supplemental Narrative

Additional Explanations

Form 990, Part XI, Line 9

“The organization has a prior period adjustment for the employee retention credit. The ERC was for the 2020 tax period but was received in 2023.”

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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/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt123625
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IRS990/PYRevenuesLessExpensesAmt087132
IRS990/PYSalariesCompEmpBnftPaidAmt0215580
IRS990/PYTotalExpensesAmt0415751
IRS990/PYTotalRevenueAmt0502883
IRS990/QuidProQuoContributionsInd0false
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IRS990/ReconcilationRevenueExpnssAmt0-34670
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0false
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt029003
IRS990/RoyaltiesGrp/TotalAmt00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt020803
IRS990/SavingsAndTempCashInvstGrp/EOYAmt020805
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt06877
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt013646
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt010552
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt031075
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt0221199
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt0393749
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt061265
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt0208070
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0221168
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt01105451
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt03
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt04
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt013
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt029003
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt0109132
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt0128110
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt028681
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt058892
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt0353818
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IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt03
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt04
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt013
IRS990ScheduleA/InvestmentIncomeCYPct00.00000
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt00
IRS990ScheduleA/OtherIncome509Grp/TotalAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.93480
IRS990ScheduleA/PublicSupportPY509Pct00.94120
IRS990ScheduleA/PublicSupportTotal509Amt01364126
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt012284
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt072307
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt010552
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt095143
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt05407
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt058661
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt064068
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IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0189375
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0236751
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0280060
IRS990ScheduleA/Total509Grp/TotalAmt01459269
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0250204
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IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0236754
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0280064
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt01459282
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IRS990/ScheduleBRequiredInd0true
IRS990ScheduleC/DirectContactLegislatorsAmt01500
IRS990ScheduleC/DirectContactLegislatorsInd0true
IRS990ScheduleC/Form4720Filed4912TaxInd0false
IRS990ScheduleC/GrantsOtherOrganizationsInd0false
IRS990ScheduleC/MailingsMembersInd0false
IRS990ScheduleC/MediaAdvertisementsInd0false
IRS990ScheduleC/NotDescribedSection501c3Ind0false
IRS990ScheduleC/OtherActivitiesInd0false
IRS990ScheduleC/PaidStaffOrManagementInd0true
IRS990ScheduleC/PublicationsOrBroadcastInd0false
IRS990ScheduleC/RalliesDemonstrationsInd0false
IRS990ScheduleC/SupplementalInformationDetail/ExplanationTxt0The organization sends volunteers and some staff for one day to Capital Hill to speak to legislators in order to raise awareness and advocate for those affected by usher Syndrome. The 1,500 was travel expense for the volunteers and staff.
IRS990ScheduleC/SupplementalInformationDetail/FormAndLineReferenceDesc0II-B 1a, 1b, 1g
IRS990ScheduleC/TotalLobbyingExpendituresAmt01500
IRS990ScheduleC/VolunteersInd0true
IRS990/ScheduleJRequiredInd0false
IRS990/ScheduleORequiredInd0true
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0The organization reviews the 990 form at a board meeting prior to submitting to the IRS.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1The organization enforced compliance with its conflict of interest policy by reviewing it periodically at board meetings.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2The organization makes its governing documents, conflict of interest policy, and financial statements available to the public upon request.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3The organization has a prior period adjustment for the employee retention credit. The ERC was for the 2020 tax period but was received in 2023.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4The organization uses the following methods to establish compensation packages for its employees IRS Form 990 of similar organizations written employee contract and approval by the board.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section B, Line 11b
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Section B, Line 12c
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990, Part VI, Section C, Line 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3Form 990, Part XI, Line 9
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4Form 990, Part VI, Section B, Line 15a
IRS990/SchoolOperatingInd0false
IRS990/SignificantChangeInd0false
IRS990/SignificantNewProgramSrvcInd0false
IRS990/StatesWhereCopyOfReturnIsFldCd0MA
IRS990/SubjectToExcsTaxNetInvstIncInd0false
IRS990/SubjectToProxyTaxInd0false
IRS990/SubjToTaxRmnrtnExPrchtPymtInd0false
IRS990/TaxablePartyNotificationInd0false

Document Assets

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Filings

Displayed year

2023 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$240,348
Liabilities
$1,587
Net assets
$238,761
Revenue
$250,204
Expenses
$284,874
Net income
-$34,670
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.88$0.08$1.80$3.78$4.37$0.58
2023Detailed filing. Detailed filing data is available for this year.$2.40$0.02$2.39$2.50$2.85$0.35
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.87$0.04$2.83$5.03$4.16$0.87
2021Detailed filing. Detailed filing data is available for this year.$1.97$0.01$1.96$1.89$1.92$0.03
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.36$0.01$1.35$2.80$2.70$0.10
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.25$0.01$1.24$1.99$1.83$0.16
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.20$0.12$1.08$2.35$2.90$0.55
2016XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.65$0.01$1.63$2.79$2.45$0.34
2014Detailed filing. Detailed filing data is available for this year.$0.87$0.01$0.86$1.04$1.33$0.29
2013Detailed filing. Detailed filing data is available for this year.$1.18$0.03$1.15$0.15$0.94$0.79
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.95$0.00$1.95$0.25
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.35$0.00$0.35$0.14$0.04$0.10
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.25$0.00$0.25$0.25$0.00$0.25