Liabilities / Assets
74th percentile
Higher debt load relative to assets than 74% of similar nonprofits.
EIN 26-4560897 • 501(c)3 • Westford, MA
Profile
Helping families cope with usher syndrome while working diligently to find a cure
Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.
Liabilities / Assets
74th percentile
Higher debt load relative to assets than 74% of similar nonprofits.
Liabilities / Revenue
73rd percentile
Higher debt load relative to revenue than 73% of similar nonprofits.
Net Margin
26th percentile
Higher net margin than 26% of similar nonprofits.
Top Officer Pay
99th percentile
Higher top officer pay than 99% of similar nonprofits.
Top officer pay equals 38.3% of source-year revenue.
Asset Growth
31st percentile
Faster asset growth than 31% of similar nonprofits.
Revenue Growth
37th percentile
Faster revenue growth than 37% of similar nonprofits.
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
Most recent year
2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.
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.
| Line | Beginning | End | Change |
|---|---|---|---|
| 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 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Krista Vasi | Executive Director | FT | $78,508 | $78,508 |
| Name | Title |
|---|---|
| Lanya McKittrick PhD | President |
| Danay Trest | Director |
| David Alexander | Director |
| Eric Wagner PhD | Director |
| Jennifer J Lentz PhD | Director |
| Kathy Anamisis | Director |
| Margaret Kenna MD MPH | Director |
| Monte Westerfield PhD | Director |
| Nancy Corderman | Director |
| Steven McCoy | Director |
| Tara Bowman | Secretary |
| Steve Mason | Treasurer |
| Line Item | Amount |
|---|---|
| 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 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| 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 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
“The organization reviews the 990 form at a board meeting prior to submitting to the IRS.”
“The organization enforced compliance with its conflict of interest policy by reviewing it periodically at board meetings.”
“The organization makes its governing documents, conflict of interest policy, and financial statements available to the public upon request.”
“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.”
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/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
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| IRS990/Desc | 0 | The organization raises awareness and accelerates research for the most common cause of combined deafness and blindnes, while providing information and support to individuals and families with Usher syndrome. This is accomplished through their connections conference where attendees have the opportunity to learn the latest on developing treatments while connecting with other affected individuals and families. The organization provides information and resources through website, webinars, etc. The organization advocates for increased federal funding for research and helps collect data to accelerate research. The organization also connects others affected by Usher syndrome to help provide a community form them and their families. |
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| IRS990/FederalGrantAuditRequiredInd | 0 | false |
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| IRS990/ForeignOfficeInd | 0 | false |
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| IRS990/ReportLandBuildingEquipmentInd | 0 | false |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | false |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990/RevenueAmt | 0 | 79308 |
| IRS990/RoyaltiesGrp/TotalAmt | 0 | 0 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 20805 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 21825 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt | 0 | 8029 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt | 0 | 6877 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt | 0 | 13646 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt | 0 | 10552 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt | 0 | 39104 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 298102 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 221199 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 393749 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 61265 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 208070 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 1182385 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt | 0 | 1020 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 2 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 2 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 2 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 3 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 1029 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt | 0 | 79308 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt | 0 | 29003 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt | 0 | 109132 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt | 0 | 128110 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt | 0 | 28681 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt | 0 | 374234 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt | 0 | 1020 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt | 0 | 2 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt | 0 | 2 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | 2 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 3 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt | 0 | 1029 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.00070 |
| IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/OtherIncome509Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.89210 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.93480 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 1389638 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 71838 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 12284 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 72307 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 10552 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 166981 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt | 0 | 63809 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt | 0 | 5407 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 58661 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt | 0 | 127877 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 377410 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 250202 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 502881 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 189375 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 236751 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 1556619 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 378430 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 250204 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 502883 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 189377 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 236754 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 1557648 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990/ScheduleBRequiredInd | 0 | true |
| IRS990ScheduleC/DirectContactLegislatorsAmt | 0 | 2200 |
| IRS990ScheduleC/DirectContactLegislatorsInd | 0 | true |
| IRS990ScheduleC/Form4720Filed4912TaxInd | 0 | false |
| IRS990ScheduleC/GrantsOtherOrganizationsInd | 0 | false |
| IRS990ScheduleC/MailingsMembersInd | 0 | false |
| IRS990ScheduleC/MediaAdvertisementsInd | 0 | false |
| IRS990ScheduleC/NotDescribedSection501c3Ind | 0 | false |
| IRS990ScheduleC/OtherActivitiesInd | 0 | false |
| IRS990ScheduleC/PaidStaffOrManagementInd | 0 | true |
| IRS990ScheduleC/PublicationsOrBroadcastInd | 0 | false |
| IRS990ScheduleC/RalliesDemonstrationsInd | 0 | false |
| IRS990ScheduleC/SupplementalInformationDetail/ExplanationTxt | 0 | The 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/FormAndLineReferenceDesc | 0 | II-B 1a, 1b, and 1g |
| IRS990ScheduleC/TotalLobbyingExpendituresAmt | 0 | 2200 |
| IRS990ScheduleC/VolunteersInd | 0 | true |
| IRS990/ScheduleJRequiredInd | 0 | false |
| IRS990/ScheduleORequiredInd | 0 | true |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | The organization reviews the 990 form at a board meeting prior to submitting to the IRS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | The organization enforced compliance with its conflict of interest policy by reviewing it periodically at board meetings. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | The organization makes its governing documents, conflict of interest policy, and financial statements available to the public upon request. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990, Part VI, Section B, Line 11b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990, Part VI, Section B, Line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990, Part VI, Section C, Line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990, Part VI, Section B, Line 15a |
| IRS990/SchoolOperatingInd | 0 | false |
| IRS990/SignificantChangeInd | 0 | false |
| IRS990/SignificantNewProgramSrvcInd | 0 | false |
| IRS990/StatesWhereCopyOfReturnIsFldCd | 0 | MA |
| IRS990/SubjectToExcsTaxNetInvstIncInd | 0 | false |
| IRS990/SubjectToProxyTaxInd | 0 | false |
| IRS990/SubjToTaxRmnrtnExPrchtPymtInd | 0 | false |
| IRS990/TaxablePartyNotificationInd | 0 | false |
| IRS990/TaxExemptBondsInd | 0 | false |
| IRS990/TerminateOperationsInd | 0 | false |
| IRS990/TotalAssetsBOYAmt | 0 | 240348 |
| IRS990/TotalAssetsEOYAmt | 0 | 188331 |
| IRS990/TotalAssetsGrp/BOYAmt | 0 | 240348 |
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