Civic Intelligence

Coalition for Usher Syndrome Research

990 • Fiscal year 2022 • EIN 26-4560897

Jan 01, 2022 to Dec 31, 2022 • Filed on Nov 15, 2023

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

47th percentile

0.01x

Higher debt load relative to assets than 47% of similar nonprofits.

2022 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2022

Liabilities / Revenue

41st percentile

0.01x

Higher debt load relative to revenue than 41% of similar nonprofits.

2022 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2022

Net Margin

67th percentile

17%

Higher net margin than 67% of similar nonprofits.

2022 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2022

Top Officer Pay

53rd percentile

$0

Higher top officer pay than 53% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2022 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2022

Asset Growth

85th percentile

45%

Faster asset growth than 85% of similar nonprofits.

2022 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2021 to 2022

Revenue Growth

93rd percentile

166%

Faster revenue growth than 93% of similar nonprofits.

2022 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2021 to 2022

Balance Sheet
Liabilities / Assets47th percentile

Assets

Up

$286,985

Up $89,706 (+45%) from 2021

Net Assets

Up

$283,221

Up $87,132 (+44%) from 2021

Liabilities

Up

$3,764

Up $2,574 (+216%) from 2021

Revenue And Expenses
Liabilities / Revenue41st percentileNet Margin67th percentile

Revenue

Up

$502,883

Up $313,506 (+166%) from 2021

Expenses

Up

$415,751

Up $223,853 (+117%) from 2021

Net Income

Up

$87,132

Up $89,653 (+3556%) from 2021

Historical Trend

Balance Sheet Trend

Asset Growth85th 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 2024: $188,331Liabilities 2024: $8,002Net Assets 2024: $180,3292024

Highlighted filing

2022

Assets$286,985
Liabilities$3,764
Net Assets$283,221
Open 2022 Filing

Operations Trend

Revenue Growth93rd 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 2024: $378,430Expenses 2024: $436,862Net Income 2024: -$58,4322024

Highlighted filing

2022

Revenue$502,883
Expenses$415,751
Net Income$87,132
Open 2022 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2022 to Dec 31, 2022
Signed
Nov 15, 2023
Return Version
2022v5.0
Gross Receipts
$502,883
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$187,429$253,348▲ $65,919
Savings and Temporary Cash Investments-$20,803-
Accounts Receivable$9,850$9,850→ $0
Prepaid Expenses and Deferred Charges-$2,984-
Total Assets$197,279$286,985▲ $89,706
Liabilities
Accounts Payable and Accrued Expenses$1,190$3,764▲ $2,574
Total Liabilities$1,190$3,764▲ $2,574
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$196,089$283,221▲ $87,132
Total Net Assets Fund Balance$196,089$283,221▲ $87,132
Total Liabilities and Net Assets / Fund Balance$197,279$286,985▲ $89,706
Compensation and Service Providers
Top Officer Pay53rd percentile

Board Members and Trustees

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

Revenue Composition

Contributions and Grants
$393,749
Program Service Revenue
$109,132
Investment Income
$2
Other Revenue
$0
All Other Contributions
$393,749
Change in Net Assets
$87,132
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$215,580
Other Expenses$199,767
Grants and Similar Amounts Paid$404
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$204,532--$204,532
Fees for Services Management-$5,770-$5,770
Office Expenses$1,057$4,621-$5,678
Other Employee Benefits$5,554--$5,554
Payroll Taxes$5,494--$5,494
Travel$4,606--$4,606
Fees for Services Accounting$1,528$600-$2,128
Advertising$1,899--$1,899
Insurance$1,502--$1,502
Information Technology$944--$944
Occupancy$913--$913
Grants to Domestic Individuals$404--$404
Fees for Services Other$400--$400
Fees for Services Legal-$188-$188
Other Expenses$50--$50
Total Functional Expenses$404,572$11,179$0$415,751
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
No
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.”

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
Lanya McKittrick
Title
President
Phone
8009469203
Signed
2023-11-15
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Lanya McKittrick
Formed
2009
Legal Domicile
Ma
Voting Board Members
13
Independent Board Members
13
Employees
3
Volunteers
75

Preparer

Firm
Foundation Group Inc
Address
2451 Atrium Way Suite 300, Nashville, TN 37214
Preparer
Andrew D Payne EA
Phone
6153619445
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IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReconcilationRevenueExpnssAmt087132
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0false
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt0109132
IRS990/RoyaltiesGrp/TotalAmt00
IRS990/SavingsAndTempCashInvstGrp/EOYAmt020803
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt013646
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt010552
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt024198
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt0393749
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt061265
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt0208070
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt0221168
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0199266
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt01083518
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt03
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt04
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt07
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt018
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt0109132
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt0128110
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt028681
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt058892
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt0324815
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt03
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt04
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt07
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt018
IRS990ScheduleA/InvestmentIncomeCYPct00.00000
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt00
IRS990ScheduleA/OtherIncome509Grp/TotalAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.94120
IRS990ScheduleA/PublicSupportPY509Pct00.99070
IRS990ScheduleA/PublicSupportTotal509Amt01325474
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt072307
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt010552
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt082859
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt058661
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt058661
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt0502881
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0189375
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0236751
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0280060
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0199266
IRS990ScheduleA/Total509Grp/TotalAmt01408333
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0502883
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0189377
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt0236754
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0280064
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0199273
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt01408351
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/DirectContactLegislatorsAmt01000
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 affect by Usher Syndrome. The 1,000 was travel expenses for the volunteers and staff.
IRS990ScheduleC/SupplementalInformationDetail/FormAndLineReferenceDesc0II-B 1a, 1b, 1g
IRS990ScheduleC/TotalLobbyingExpendituresAmt01000
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/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
IRS990/SchoolOperatingInd0false
IRS990/SignificantChangeInd0false
IRS990/SignificantNewProgramSrvcInd0false
IRS990/StatesWhereCopyOfReturnIsFldCd0MA
IRS990/StatesWhereCopyOfReturnIsFldCd1NY
IRS990/SubjectToExcsTaxNetInvstIncInd0false
IRS990/SubjectToProxyTaxInd0false
IRS990/SubjToTaxRmnrtnExPrchtPymtInd0false
IRS990/TaxablePartyNotificationInd0false
IRS990/TaxExemptBondsInd0false
IRS990/TerminateOperationsInd0false
IRS990/TotalAssetsBOYAmt0197279
IRS990/TotalAssetsEOYAmt0286985
IRS990/TotalAssetsGrp/BOYAmt0197279
IRS990/TotalAssetsGrp/EOYAmt0286985
IRS990/TotalCompGreaterThan150KInd0false
IRS990/TotalContributionsAmt0393749
IRS990/TotalEmployeeCnt03
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt00
IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt011179
IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt0404572
IRS990/TotalFunctionalExpensesGrp/TotalAmt0415751
IRS990/TotalGrossUBIAmt00
IRS990/TotalLiabilitiesBOYAmt01190
IRS990/TotalLiabilitiesEOYAmt03764

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2022 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$286,985
Liabilities
$3,764
Net assets
$283,221
Revenue
$502,883
Expenses
$415,751
Net income
$87,132
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
2022Detailed filing. Detailed filing data is available for this year.$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
Peer Organizations

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