Liabilities / Assets
44th percentile
Higher debt load relative to assets than 44% of similar nonprofits.
990 • Fiscal year 2021 • EIN 91-1397792
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
44th percentile
Higher debt load relative to assets than 44% of similar nonprofits.
Liabilities / Revenue
43rd percentile
Higher debt load relative to revenue than 43% of similar nonprofits.
Net Margin
67th percentile
Higher net margin than 67% of similar nonprofits.
Top Officer Pay
67th percentile
Higher top officer pay than 67% of similar nonprofits.
Top officer pay equals 10.7% of source-year revenue.
Asset Growth
64th percentile
Faster asset growth than 64% of similar nonprofits.
Revenue Growth
10th percentile
Faster revenue growth than 10% of similar nonprofits.
Assets
Up$1,208,507
Up $179,978 (+17%) from 2020
Net Assets
Up$1,155,261
Up $206,137 (+22%) from 2020
Liabilities
Down$53,246
Down $26,159 (-33%) from 2020
Revenue
Down$875,074
Down $353,533 (-29%) from 2020
Expenses
Down$668,937
Down $49,082 (-6.8%) from 2020
Net Income
Down$206,137
Down $304,451 (-60%) from 2020
Our long-term vision is a world without batten disease. Our mission is to support batten families, fund and facilitate research and advocate for treatments and a cure.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $184,309 | $532,183 | ▲ $347,874 |
| Investments in Publicly Traded Securities | $465,498 | $518,660 | ▲ $53,162 |
| Accounts Receivable | $307,269 | $94,596 | ▼ $212,673 |
| Land, Buildings, and Equipment, Net | $65,893 | $57,608 | ▼ $8,285 |
| Total Assets | $1,028,529 | $1,208,507 | ▲ $179,978 |
| Other Assets Total | $5,560 | $5,460 | ▼ $100 |
| Liabilities | |||
| Unsecured Notes Loans Payable | $54,242 | $49,532 | ▼ $4,710 |
| Accounts Payable and Accrued Expenses | $25,163 | $3,714 | ▼ $21,449 |
| Total Liabilities | $79,405 | $53,246 | ▼ $26,159 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $694,991 | $946,699 | ▲ $251,708 |
| Net Assets With Donor Restrictions | $254,133 | $208,562 | ▼ $45,571 |
| Total Net Assets Fund Balance | $949,124 | $1,155,261 | ▲ $206,137 |
| Total Liabilities and Net Assets / Fund Balance | $1,028,529 | $1,208,507 | ▲ $179,978 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $57,608 | $42,906 | $100,514 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Amy Fenton Parker | President & | FT | $93,208 | $93,208 |
| Name | Title |
|---|---|
| Darlene Royalty | Board Chair |
| Barbara Wuebbels | Board Vice C |
| Barbara Mcdonough | Director |
| Brock Benroth | Director |
| David Pearce | Director |
| Fred Surrey | Director |
| Kate Haller | Director |
| Rene Martinez | Director |
| Tony Ferrandino | Director |
| Trent Lewis | Director |
| Donna Fogle | Secretary |
| John Ireland | Sib Represen |
| Bob Jensen | Treasurer |
| Contribution Type | Contribution Count | Reported Amount | Valuation Method |
|---|---|---|---|
| Securities Publicly Traded | 1 | $25,000 | Fair Market Value (FMV) |
| Other Non Cash Contri Table | 5 | $9,134 | Fair Market Value (FMV) |
| Other Non Cash Contri Table | 1 | $394 | Fair Market Value (FMV) |
| Total Noncash Contributions | 7 | $34,528 | - |
| Line Item | Amount |
|---|---|
| Other Expenses | $365,631 |
| Salaries, Compensation, and Employee Benefits | $293,306 |
| Total Fundraising Expense | $107,236 |
| Grants and Similar Amounts Paid | $10,000 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Other Salaries and Wages | $95,657 | $38,237 | $40,780 | $174,674 |
| Conferences and Meetings | $109,343 | $815 | - | $110,158 |
| Current Officers, Directors, Trustees, and Key Employees | $51,043 | $20,404 | $21,761 | $93,208 |
| Office Expenses | $29,706 | $11,874 | $12,664 | $54,244 |
| Occupancy | $21,437 | $8,569 | $9,139 | $39,145 |
| Travel | $33,624 | $3,894 | $502 | $38,020 |
| Payroll Taxes | $10,888 | $4,352 | $4,642 | $19,882 |
| Fees for Services Accounting | $29 | $16,654 | - | $16,683 |
| Depreciation Depletion | - | $11,489 | - | $11,489 |
| Grants to Domestic Orgs | $10,000 | - | - | $10,000 |
| Other Employee Benefits | $3,035 | $1,213 | $1,294 | $5,542 |
| Fees for Services Other | - | $4,341 | - | $4,341 |
| Insurance | - | $3,931 | - | $3,931 |
| Other Expenses | $1,210 | $1,594 | $97 | $2,901 |
| All Other Expenses | $1,700 | $245 | - | $1,945 |
| Information Technology | - | $257 | - | $257 |
| Total Functional Expenses | $416,334 | $145,367 | $107,236 | $668,937 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| University of Rochester | Rochester, NY | 501c3 | Research | $10,000 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
“No committees of bdsra have the authority to act on behalf of the board.”
“The governing body will receive and review the return prior to filing.”
“Officers, directors and key employees are required to annually sign a letter of agreement with conflict of interest policies and guidelines and disclose all relationships with other entities.”
“Record requests are individually reviewed and approved 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.
| Path | # | Value |
|---|---|---|
| IRS990/AccountantCompileOrReviewInd | 0 | false |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 25163 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 3714 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 307269 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 94596 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE. |
| IRS990/AllOtherContributionsAmt | 0 | 757148 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 245 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 1700 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 1945 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | AMY FENTON PARKER |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 8004484570 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 2780 AIRPORT DRIVE |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | COLUMBUS |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | OH |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 43219 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 184309 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 532183 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 21761 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 20404 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 51043 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 93208 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | false |
| IRS990/CompensationProcessOtherInd | 0 | false |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 815 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 109343 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 110158 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 811390 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 10000 |
| IRS990/CYInvestmentIncomeAmt | 0 | 33129 |
| IRS990/CYOtherExpensesAmt | 0 | 365631 |
| IRS990/CYOtherRevenueAmt | 0 | 12355 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 18200 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 206137 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 293306 |
| IRS990/CYTotalExpensesAmt | 0 | 668937 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 107236 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 875074 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | true |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 11489 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 11489 |
| IRS990/Desc | 0 | PROGRAMS SUCH AS THE SIBLING PROGRAM, FAMILY HELP FUND, PARENT/MENTORS AND THE GENERAL BEREAVEMENT PROGRAM ALL WILL HELP TO ALLEVIATE STRESS AND HARDSHIP ON FAMILIES WHOSE LOVED ONES ARE VICTIMS OF BATTEN DISEASE. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 254133 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 208562 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 7 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 296991 |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 16654 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 29 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 16683 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 4341 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 4341 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form1098CFiledInd | 0 | false |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form8899Filedind | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 7 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 8 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 9 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 10 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 11 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 12 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | AMY FENTON PARKER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | DARLENE ROYALTY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | BARBARA WUEBBELS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | BOB JENSEN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | DONNA FOGLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | JOHN IRELAND |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | FRED SURREY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | BROCK BENROTH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | TONY FERRANDINO |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | KATE HALLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | BARBARA MCDONOUGH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | TRENT LEWIS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | DAVID PEARCE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | RENE MARTINEZ |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 93208 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | PRESIDENT & |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | BOARD CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | BOARD VICE C |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | TREASURER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | SIB REPRESEN |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | DIRECTOR |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 1987 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedInd | 0 | false |
| IRS990/FundraisingActivitiesInd | 0 | false |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 13 |
| IRS990/GovernmentGrantsAmt | 0 | 54242 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 10000 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 10000 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 875074 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IndependentAuditFinclStmtInd | 0 | false |
| IRS990/IndependentVotingMemberCnt | 0 | 13 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 257 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 257 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 3931 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 3931 |
| IRS990/InvestmentIncomeGrp/RelatedOrExemptFuncIncomeAmt | 0 | 33129 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 33129 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 465498 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 518660 |
| IRS990/IRPDocumentCnt | 0 | 5 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 42906 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 65893 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 57608 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 100514 |
| IRS990/LegalDomicileStateCd | 0 | OH |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | true |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | false |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | false |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | false |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 949124 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 1155261 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 694991 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 946699 |
| IRS990/NoncashContributionsAmt | 0 | 34528 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 9139 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 8569 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 21437 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 39145 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 12664 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 11874 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 29706 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 54244 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 5560 |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 5460 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 1294 |
| IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt | 0 | 1213 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 3035 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 5542 |
| IRS990/OtherExpensesGrp/Desc | 0 | PROGRAM EXPENSES |
| IRS990/OtherExpensesGrp/Desc | 1 | FUNDRAISING EXPENSES |
| IRS990/OtherExpensesGrp/Desc | 2 | BANK FEES |
| IRS990/OtherExpensesGrp/Desc | 3 | MEALS |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 260 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 16097 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 97 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 173 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 5082 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 12243 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 3 | 1594 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 48662 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 1210 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 49095 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 21179 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 12243 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 2901 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 900099 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | SALES |
| IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt | 0 | 12355 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 12355 |
| IRS990/OtherRevenueTotalAmt | 0 | 12355 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 40780 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 38237 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 95657 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 174674 |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | false |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 4642 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 4352 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 10888 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 19882 |
| IRS990/PoliciesReferenceChaptersInd | 0 | true |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrincipalOfficerNm | 0 | AMY FENTON PARKER |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 900099 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | PROGRAM SERVICE FEES |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 18200 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 18200 |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | GRANTS WERE GIVEN FOR RESEARCH FOR A CURE FOR BATTEN DISEASE. |
| IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt | 0 | 10000 |
| IRS990/ProgSrvcAccomActy2Grp/GrantAmt | 0 | 10000 |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | CONFERENCES AND CONVENTIONS HELD FOR RESEARCH, DISCUSSIONS AND SUPPORT FOR A CURE FOR BATTEN DISEASE. |
| IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt | 0 | 109343 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 968030 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 95328 |
| IRS990/PYInvestmentIncomeAmt | 0 | 23619 |
| IRS990/PYOtherExpensesAmt | 0 | 336887 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 236958 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 510588 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 285804 |
| IRS990/PYTotalExpensesAmt | 0 | 718019 |
| IRS990/PYTotalRevenueAmt | 0 | 1228607 |
| IRS990/QuidProQuoContributionsInd | 0 | false |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | false |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 206137 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/ReportInvestmentsOtherSecInd | 0 | false |
| IRS990/ReportLandBuildingEquipmentInd | 0 | true |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | false |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990/RevenueAmt | 0 | 18200 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt | 0 | 5920 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt | 0 | 3370 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt | 0 | 9290 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | SALES 35,300 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | PART III, LINE 12 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 811390 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 968030 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 883058 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 967924 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 834109 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 4464511 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt | 0 | 33129 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 23619 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 47608 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | -13024 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 78 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 91410 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt | 0 | 18200 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt | 0 | 236958 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt | 0 | 255158 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt | 0 | 33129 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt | 0 | 23619 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt | 0 | 47608 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | -13024 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 78 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt | 0 | 91410 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.02000 |
| IRS990ScheduleA/InvestmentIncomePYPct | 0 | 0.01000 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearAmt | 0 | 12355 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 22945 |
| IRS990ScheduleA/OtherIncome509Grp/TotalAmt | 0 | 35300 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.97190 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.98050 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 4710379 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 5920 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 3370 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 9290 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 829590 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 1204988 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 883058 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 967924 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 834109 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 4719669 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 875074 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 1228607 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 953611 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 954900 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 834187 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 4846379 |
| 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 |
| IRS990ScheduleD/EquipmentGrp/BookValueAmt | 0 | 57608 |
| IRS990ScheduleD/EquipmentGrp/DepreciationAmt | 0 | 42906 |
| IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt | 0 | 100514 |
| IRS990ScheduleD/TotalBookValueLandBuildingsAmt | 0 | 57608 |
| IRS990ScheduleI/GrantRecordsMaintainedInd | 0 | true |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 0 | 10000 |
| IRS990ScheduleI/RecipientTable/IRCSectionDesc | 0 | 501C3 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | RESEARCH |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 0 | UNIVERSITY OF ROCHESTER |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine2Txt | 0 | MEDICAL CENTER |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 0 | 160743209 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 0 | 601 ELMWOOD AVENUE |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | ROCHESTER |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | NY |
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Displayed year
2021 • Form 990Detailed filing. Detailed filing data is available for this year.
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