Civic Intelligence

Coalition for Usher Syndrome Research

EIN 26-4560897 • 501(c)3 • Westford, MA

Profile

Helping families cope with usher syndrome while working diligently to find a cure

9 Cornerstone Square STE 400-224Westford, MA 01886

www.usher-syndrome.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

74th percentile

0.04x

Higher debt load relative to assets than 74% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Liabilities / Revenue

73rd percentile

0.02x

Higher debt load relative to revenue than 73% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Net Margin

26th percentile

-15%

Higher net margin than 26% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Top Officer Pay

99th percentile

$72,500

Higher top officer pay than 99% of similar nonprofits.

Top officer pay equals 38.3% of source-year revenue.

501(c)3 • <$500k nonprofits • Source year 2021

Asset Growth

31st percentile

-19%

Faster asset growth than 31% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2022 to 2024

Revenue Growth

37th percentile

-13%

Faster revenue growth than 37% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2022 to 2024

Assets

Down

$188,331

Down $98,654 (-34%) from 2022

Liabilities

Up

$8,002

Up $4,238 (+113%) from 2022

Net Assets

Down

$180,329

Down $102,892 (-36%) from 2022

Revenue

Down

$378,430

Down $124,453 (-25%) from 2022

Expenses

Up

$436,862

Up $21,111 (+5.1%) from 2022

Net Income

Down

-$58,432

Down $145,564 (-167%) from 2022

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$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 2024: $188,331Liabilities 2024: $8,002Net Assets 2024: $180,3292024

Highlighted filing

2024

Assets$188,331
Liabilities$8,002
Net Assets$180,329

Operations Trend

Revenue, expenses, and net income by year, with the latest 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 2024: $378,430Expenses 2024: $436,862Net Income 2024: -$58,4322024

Highlighted filing

2024

Revenue$378,430
Expenses$436,862
Net Income-$58,432

Filings

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
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
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
May 8, 2025
Return Version
2024v5.1
Gross Receipts
$378,430
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$219,543$166,214▼ $53,329
Savings and Temporary Cash Investments$20,805$21,825▲ $1,020
Prepaid Expenses and Deferred Charges-$292-
Total Assets$240,348$188,331▼ $52,017
Liabilities
Accounts Payable and Accrued Expenses$1,587$8,002▲ $6,415
Total Liabilities$1,587$8,002▲ $6,415
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$238,761$180,329▼ $58,432
Total Net Assets Fund Balance$238,761$180,329▼ $58,432
Total Liabilities and Net Assets / Fund Balance$240,348$188,331▼ $52,017
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Krista VasiExecutive DirectorFT$78,508$78,508

Board Members and Trustees

Revenue and Support

Revenue Composition

Contributions and Grants
$298,102
Program Service Revenue
$79,308
Investment Income
$1,020
Other Revenue
$0
All Other Contributions
$298,102
Change in Net Assets
$-58,432
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$235,265
Other Expenses$201,597
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$114,457$14,310-$128,767
Current Officers, Directors, Trustees, and Key Employees$69,596$8,912-$78,508
Travel$21,581--$21,581
Payroll Taxes$13,245$2,494-$15,739
Information Technology$12,472--$12,472
Other Employee Benefits-$12,251-$12,251
Fees for Services Other$10,820--$10,820
Office Expenses$1,063$8,882-$9,945
Fees for Services Accounting-$7,900-$7,900
Insurance-$3,986-$3,986
Advertising$582--$582
Fees for Services Legal-$355-$355
Other Expenses$652$116-$116
Total Functional Expenses$377,656$59,206$0$436,862
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
2025-05-08
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
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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/PayrollTaxesGrp/ProgramServicesAmt013245
IRS990/PayrollTaxesGrp/TotalAmt015739
IRS990/PensionPlanContributionsGrp/TotalAmt00
IRS990/PoliticalCampaignActyInd0false
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt0292
IRS990/PrincipalOfficerNm0Lanya McKittrick
IRS990/ProfessionalFundraisingInd0false
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/BusinessCd1900099
IRS990/ProgramServiceRevenueGrp/Desc0Conference Revenue
IRS990/ProgramServiceRevenueGrp/Desc1Consulting
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt070558
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt18750
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt070558
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt18750
IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt0221199
IRS990/PYExcessBenefitTransInd0false
IRS990/PYInvestmentIncomeAmt02
IRS990/PymtTravelEntrtnmntPubOfclGrp/TotalAmt00
IRS990/PYOtherExpensesAmt082216
IRS990/PYProgramServiceRevenueAmt029003
IRS990/PYRevenuesLessExpensesAmt0-34670
IRS990/PYSalariesCompEmpBnftPaidAmt0202658
IRS990/PYTotalExpensesAmt0284874
IRS990/PYTotalRevenueAmt0250204
IRS990/QuidProQuoContributionsInd0false
IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReconcilationRevenueExpnssAmt0-58432
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0false
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt079308
IRS990/RoyaltiesGrp/TotalAmt00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt020805
IRS990/SavingsAndTempCashInvstGrp/EOYAmt021825
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt08029
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt06877
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt013646
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt010552
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt039104
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt0298102
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt0221199
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt0393749
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt061265
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0208070
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt01182385
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt01020
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt03
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt01029
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt079308
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt029003
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt0109132
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt0128110
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt028681
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt0374234
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt01020
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt03
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt01029
IRS990ScheduleA/InvestmentIncomeCYPct00.00070
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt00
IRS990ScheduleA/OtherIncome509Grp/TotalAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.89210
IRS990ScheduleA/PublicSupportPY509Pct00.93480
IRS990ScheduleA/PublicSupportTotal509Amt01389638
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt071838
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt012284
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt072307
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt010552
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt0166981
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt063809
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt05407
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt058661
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt0127877
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt0377410
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0250202
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0502881
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0189375
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0236751
IRS990ScheduleA/Total509Grp/TotalAmt01556619
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0378430
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0250204
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt0502883
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0189377
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0236754
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt01557648
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd0true
IRS990ScheduleC/DirectContactLegislatorsAmt02200
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 2,200 was for travel expenses for both volunteers and staff.
IRS990ScheduleC/SupplementalInformationDetail/FormAndLineReferenceDesc0II-B 1a, 1b, and 1g
IRS990ScheduleC/TotalLobbyingExpendituresAmt02200
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 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 VI, Section B, Line 15a
IRS990/SchoolOperatingInd0false
IRS990/SignificantChangeInd0false
IRS990/SignificantNewProgramSrvcInd0false
IRS990/StatesWhereCopyOfReturnIsFldCd0MA
IRS990/SubjectToExcsTaxNetInvstIncInd0false
IRS990/SubjectToProxyTaxInd0false
IRS990/SubjToTaxRmnrtnExPrchtPymtInd0false
IRS990/TaxablePartyNotificationInd0false
IRS990/TaxExemptBondsInd0false
IRS990/TerminateOperationsInd0false
IRS990/TotalAssetsBOYAmt0240348
IRS990/TotalAssetsEOYAmt0188331
IRS990/TotalAssetsGrp/BOYAmt0240348

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