Liabilities / Assets
9th percentile
Higher debt load relative to assets than 9% of similar nonprofits.
990 • Fiscal year 2019 • EIN 46-4322131
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
9th percentile
Higher debt load relative to assets than 9% of similar nonprofits.
Liabilities / Revenue
10th percentile
Higher debt load relative to revenue than 10% of similar nonprofits.
Net Margin
59th percentile
Higher net margin than 59% of similar nonprofits.
Top Officer Pay
32nd percentile
Higher top officer pay than 32% of similar nonprofits.
Top officer pay equals 9.7% of source-year revenue.
Asset Growth
31st percentile
Faster asset growth than 31% of similar nonprofits.
Revenue Growth
8th percentile
Faster revenue growth than 8% of similar nonprofits.
Assets
Down$10,749,584
Down $68,256 (-0.6%) from 2018
Net Assets
Down$10,722,031
Down $95,809 (-0.9%) from 2018
Liabilities
Up$27,553
Up $27,553 from 2018
Revenue
Down$1,345,798
Down $713,181 (-35%) from 2018
Expenses
Up$1,263,898
Up $110,488 (+9.6%) from 2018
Net Income
Down$81,900
Down $823,669 (-91%) from 2018
SEE ATTACHED STATEMENT
To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Investments in Publicly Traded Securities | $7,161,107 | $7,276,193 | ▲ $115,086 |
| Savings and Temporary Cash Investments | $2,435,021 | $2,992,715 | ▲ $557,694 |
| Cash and Non-Interest-Bearing Accounts | $1,221,712 | $480,676 | ▼ $741,036 |
| Accounts Receivable | - | $0 | - |
| Other Notes and Loans Receivable, Net | - | $0 | - |
| Pledges and Grants Receivable | - | $0 | - |
| Receivable From Disqualified Prsn | - | $0 | - |
| Receivables From Officers Etc | - | $0 | - |
| Investments Other Securities | - | $0 | - |
| Investments Program Related | - | $0 | - |
| Land, Buildings, and Equipment, Net | - | $0 | - |
| Intangible Assets | - | $0 | - |
| Inventories for Sale or Use | - | $0 | - |
| Prepaid Expenses and Deferred Charges | - | $0 | - |
| Total Assets | $10,817,840 | $10,749,584 | ▼ $68,256 |
| Other Assets Total | - | $0 | - |
| Liabilities | |||
| Other Liabilities | - | $27,553 | - |
| Total Liabilities | $0 | $27,553 | ▲ $27,553 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $10,817,840 | $10,722,031 | ▼ $95,809 |
| Total Net Assets Fund Balance | $10,817,840 | $10,722,031 | ▼ $95,809 |
| Total Liabilities and Net Assets / Fund Balance | $10,817,840 | $10,749,584 | ▼ $68,256 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Glenn O'Neill | Executive Director | FT | $122,000 | $8,000 | $130,000 |
| Katie Walton | Vice President | FT | $78,846 | - | $78,846 |
| Cara O'Neill | Chief Science | PT | $75,000 | - | $75,000 |
| Name | Title |
|---|---|
| Daniel Fraley | Board Chair |
| Adam Shaywitz | Director |
| Ben Von Wong | Director |
| Faith McAngus | Director |
| Rachel Best | Director |
| Valerie Byers | Director |
| Shelby Leonardi | Secretary |
| Line Item | Amount |
|---|---|
| Grants and Similar Amounts Paid | $676,206 |
| Salaries, Compensation, and Employee Benefits | $401,485 |
| Other Expenses | $186,207 |
| Total Fundraising Expense | $120,939 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Grants to Domestic Orgs | $571,956 | - | - | $571,956 |
| Current Officers, Directors, Trustees, and Key Employees | $184,500 | $42,577 | $56,769 | $283,846 |
| Foreign Grants | $104,250 | - | - | $104,250 |
| Other Salaries and Wages | $35,319 | $8,151 | $10,867 | $54,337 |
| Other Employee Benefits | $21,111 | $4,872 | $6,496 | $32,479 |
| Advertising | $20,861 | - | $8,961 | $29,822 |
| Payroll Taxes | $18,471 | $4,262 | $5,683 | $28,416 |
| Travel | $18,518 | $4,665 | - | $23,183 |
| Fees for Services Legal | $22,995 | - | - | $22,995 |
| Fees for Services Accounting | - | $15,275 | - | $15,275 |
| Occupancy | $11,375 | - | - | $11,375 |
| All Other Expenses | $6,730 | $3,976 | - | $10,706 |
| Office Expenses | $9,075 | - | - | $9,075 |
| Conferences and Meetings | $2,532 | $2,633 | - | $5,165 |
| Other Expenses | $4,429 | $8,294 | $31,424 | $4,429 |
| Insurance | - | $2,944 | - | $2,944 |
| Pension Plan Contributions | $1,389 | $279 | $739 | $2,407 |
| Information Technology | $141 | - | - | $141 |
| Total Functional Expenses | $1,045,031 | $97,928 | $120,939 | $1,263,898 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| UNC - Chapel Hill | Chapel Hill, NC | - | Treating MPS | $300,000 |
| University of North Carolina | Chapel Hill, NC | - | Facilitate and enhance the CNS entr | $93,400 |
| Lundquist Institute | Torrance, CA | - | Open-label pilot study | $70,000 |
| The Regents of University of | Berkeley, CA | - | Neural Stem Cells Engineered | $47,795 |
| Research Triangle Institute | Raleigh, NC | - | Caregiver Preference Study | $30,761 |
| The Pennsylvania State Univer | State College, PA | - | Role of Autophagy in Mucopolysaccha | $30,000 |
| Region | Activity | Services | Offices | Employees | Spending |
|---|---|---|---|---|---|
| Europe | Grants | See Schedule O | 0 | 0 | $104,250 |
| Line Item | Amount |
|---|---|
| Fundraising Direct Expenses | $48,699 |
| Fundraising Gross Income | $44,750 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Sale Event Fundraiser | $30,000 | - | - | - |
| Golf / Auction Event | $96,985 | $15,390 | - | $15,390 |
| Total Events | $260,625 | $44,750 | $48,699 | $-3,949 |
| Line Item | Beginning | End | Change |
|---|---|---|---|
| Receivables from Disqualified Persons | - | $0 | - |
| Receivables from Officers, Directors, Trustees, and Key Employees | - | $0 | - |
| Liability | Amount |
|---|---|
| Accrued payroll | $14,722 |
| Credit Card Balances | $12,831 |
“Glenn ONeill and Cara ONeill MD FAAP are husband and wife.”
“All Board Members have reviewed the Form 990.”
“Conflicts of interest are reviewed during Board Meetings”
“The Employment Committee is responsible for all hiring decisions, including compensation, benefits, job performance etc... The Board members make up the Employment Committee. The Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees.”
“The Employment Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees.”
“The organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website.”
“TITLE: Caregiver Preference StudyAWARDEE: Research Triangle InstitutePost Office Box 900002Raleigh, NC 27675-9000AMOUNT IN 2019: $64,011.15 in check paymentsEIN: 56-0686338DATE: February 1, 2018 - March 31, 2020”
“TITLE: Facilitate and enhance the CNS entry of systemically delivered AAV vectors for treating MPSIIIA and MPSIIIB in miceAwardee: University of North Carolina - Chapel Hill104 Airport Dr. #2200, Chapel Hill, NC 27599AMOUNT IN 2019: $70,000.00 in check paymentEIN: 56-6001393Date: 12/11/2019”
“As of the time of filing this 990, Cure Sanfilippo Foundation is undergoing an Audit for Calendar Year 2019. The Audit for Calendar Year 2018 has been completed.”
“The following grants were provided:”
“TITLE: Neural Stem Cells Engineered to Produce Sulfamidase for treatment of Sanfilippo SyndromeAWARDEE: The Regents of the University of California AMOUNT IN 2019: $47,794.50 check paymentEIN: 94-6036494DATE: 12/20/2019”
“TITLE: New Therpeutic Strategies for the treatment of behavioral symptoms in MPSIIIAAwardee: Fondazione Telethon (TIGEM)6315 Via Della Rosetta N 00186, Rome Italia, ITAMOUNT IN 2019: $33,000.00Date: May 2019”
“TITLE: Open-Label Pilot Study of the effects of Anakinra in MPS IIIAwardee: The Lundquist Institute1124 West Carson Street, Torrance, CA 90502EIN: 95-2138184AMOUNT IN 2019: $70,000 in check paymentDate: 12/17/2019”
“TITLE: Repurposing FDA drugs for the treatment of MucopolysaccharidosisAWARDEE: Fondazione Telethon6315 Via Della Rosetta N 1 00186, Rome, Italla, ITAMOUNT IN 2019: $30,000 wire transferDATE: 12/13/2019”
“TITLE: Systemic scAAV9-mCMV-hsGSH gene delivery for treating MPS IIIAAwardee: UNC - Chapel HillAmount in 2019: $300,000 wire transferDate: 9/13/2019EIN: 59-1711424”
“TITLE: Targeting amyloid aggregation as a new therapeutic approach to treat the CNS in Sanfilippo SyndromeAWARDEE: Fondazione Telethon6315 Via Della Rosetta N 1 00186, Rome, Italla, ITAMOUNT IN 2019: $41,250 wire transferDATE: June 2019”
“TITLE: The Role of Autophagy in Mucopolysaccharidoses and Its potential as a Therapeutic TargetAwardee: The Pennsylvania State University227 West Beaver Ave., Suite 401, State College, PA 16801EIN: 24-6000376AMOUNT IN 2019: $30,000 Date: 12/3/2019”
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 | true |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 0 |
| IRS990/AcctCompileOrReviewBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome |
| IRS990/AdvertisingGrp/FundraisingAmt | 0 | 8961 |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 20861 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 29822 |
| IRS990/AllOtherContributionsAmt | 0 | 995999 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 3976 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 6730 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 10706 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | false |
| IRS990/BenefitsToMembersGrp/TotalAmt | 0 | 0 |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | Glenn O'Neill |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 8034130525 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | PO Box 6901 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | Columbia |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | SC |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 29260 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 1221712 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 480676 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 56769 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 42577 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 184500 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 283846 |
| IRS990/CompDisqualPersonsGrp/TotalAmt | 0 | 0 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | true |
| IRS990/CompensationProcessOtherInd | 0 | true |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 2633 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 2532 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 5165 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/ContriRptFundraisingEventAmt | 0 | 215875 |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 1211874 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 676206 |
| IRS990/CYInvestmentIncomeAmt | 0 | 127390 |
| IRS990/CYOtherExpensesAmt | 0 | 186207 |
| IRS990/CYOtherRevenueAmt | 0 | 6534 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 81900 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 401485 |
| IRS990/CYTotalExpensesAmt | 0 | 1263898 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 120939 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 1345798 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 0 |
| IRS990/Desc | 0 | To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 4 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 1057881 |
| IRS990/FamilyOrBusinessRlnInd | 0 | true |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 15275 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 15275 |
| IRS990/FeesForServicesLegalGrp/ProgramServicesAmt | 0 | 22995 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 22995 |
| IRS990/FeesForServicesLobbyingGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesManagementGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesProfFundraising/TotalAmt | 0 | 0 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 0 |
| IRS990/ForeignActivitiesInd | 0 | true |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignGrantsGrp/ProgramServicesAmt | 0 | 104250 |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 104250 |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form1098CFiledInd | 0 | false |
| IRS990/Form8282FiledCnt | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form8899Filedind | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 0 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 1 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 2 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 3 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 4 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 5 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 6 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 7 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 8 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 9 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 50.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 25.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 5.00 |
| 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/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/OtherCompensationAmt | 0 | 8000 |
| 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/PersonNm | 0 | Glenn O'Neill |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | Katie Walton |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | Cara O'Neill |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | Daniel Fraley |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | Rachel Best |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | Faith McAngus |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | Shelby Leonardi |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | Valerie Byers |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | Ben Von Wong |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | Adam Shaywitz |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 122000 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 78846 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 75000 |
| 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/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/TitleTxt | 0 | Executive Dir. |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | Vice President |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | Chief Science |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | Board Chair |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | Secretary |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | Director |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 2013 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedInd | 0 | false |
| IRS990/FundraisingActivitiesInd | 0 | true |
| IRS990/FundraisingAmt | 0 | 215875 |
| IRS990/FundraisingDirectExpensesAmt | 0 | 48699 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 44750 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 7 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 0 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 571956 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 571956 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 1394497 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IncmFromInvestBondProceedsGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | false |
| IRS990/IndependentVotingMemberCnt | 0 | 7 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 141 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 141 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 2944 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 2944 |
| IRS990/IntangibleAssetsGrp/EOYAmt | 0 | 0 |
| IRS990/InterestGrp/TotalAmt | 0 | 0 |
| IRS990/InventoriesForSaleOrUseGrp/EOYAmt | 0 | 0 |
| IRS990/InvestmentExpenseAmt | 0 | -7492 |
| IRS990/InvestmentIncomeGrp/RelatedOrExemptFuncIncomeAmt | 0 | 127390 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 127390 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsOtherSecuritiesGrp/EOYAmt | 0 | 0 |
| IRS990/InvestmentsProgramRelatedGrp/EOYAmt | 0 | 0 |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 7161107 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 7276193 |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | SC |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | false |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | false |
| IRS990/MethodOfAccountingCashInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | true |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | true |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 10817840 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 10722031 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | -3949 |
| IRS990/NetIncomeFromGamingGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetRentalIncomeOrLossGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | -148075 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 10817840 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 10722031 |
| IRS990/NoncashContributionsAmt | 0 | 1783 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 11375 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 11375 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 9075 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 9075 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 0 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 6496 |
| IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt | 0 | 4872 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 21111 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 32479 |
| IRS990/OtherExpensesGrp/Desc | 0 | Events |
| IRS990/OtherExpensesGrp/Desc | 1 | Web Service |
| IRS990/OtherExpensesGrp/Desc | 2 | Printing and Publications |
| IRS990/OtherExpensesGrp/Desc | 3 | Taxes |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 31424 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 8294 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 11379 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 4429 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 31424 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 11379 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 8294 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 4429 |
| IRS990/OtherLiabilitiesGrp/EOYAmt | 0 | 27553 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | Billable Expenditure Rev |
| IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt | 0 | 10483 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 10483 |
| IRS990/OtherRevenueTotalAmt | 0 | 10483 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 10867 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 8151 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 35319 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 54337 |
| IRS990/OthNotesLoansReceivableNetGrp/EOYAmt | 0 | 0 |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PaymentsToAffiliatesGrp/TotalAmt | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | false |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 5683 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 4262 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 18471 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 28416 |
| IRS990/PensionPlanContributionsGrp/FundraisingAmt | 0 | 739 |
| IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt | 0 | 279 |
| IRS990/PensionPlanContributionsGrp/ProgramServicesAmt | 0 | 1389 |
| IRS990/PensionPlanContributionsGrp/TotalAmt | 0 | 2407 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 0 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 0 |
| IRS990/PrincipalOfficerNm | 0 | Glenn O'Neill |
| IRS990/PriorPeriodAdjustmentsAmt | 0 | -22142 |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 1748376 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 636976 |
| IRS990/PYInvestmentIncomeAmt | 0 | 31628 |
| IRS990/PymtTravelEntrtnmntPubOfclGrp/TotalAmt | 0 | 0 |
| IRS990/PYOtherExpensesAmt | 0 | 229815 |
| IRS990/PYOtherRevenueAmt | 0 | 278975 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 905569 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 286619 |
| IRS990/PYTotalExpensesAmt | 0 | 1153410 |
| IRS990/PYTotalRevenueAmt | 0 | 2058979 |
| IRS990/QuidProQuoContributionsInd | 0 | false |
| IRS990/RcvblFromDisqualifiedPrsnGrp/EOYAmt | 0 | 0 |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | false |
| IRS990/ReceivablesFromOfficersEtcGrp/EOYAmt | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 81900 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/ReportInvestmentsOtherSecInd | 0 | false |
| IRS990/ReportLandBuildingEquipmentInd | 0 | false |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | true |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990/RoyaltiesGrp/TotalAmt | 0 | 0 |
| IRS990/RoyaltiesRevenueGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 2435021 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 2992715 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 1256624 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 2052054 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 1515412 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 636440 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 582508 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 6043038 |
| IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 127390 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 31628 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 2943703 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 1521 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | -120540 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 2983702 |
| IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt | 0 | 10483 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 791 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 80 |
| IRS990ScheduleA/OtherIncome170Grp/TotalAmt | 0 | 871 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.66940 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.71730 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 6043038 |
| IRS990ScheduleA/SubstantialContributorsTotAmt | 0 | 0 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 1256624 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 2052054 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 1515412 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 636440 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 582508 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 6043038 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 9027611 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt | 0 | 0 |
| 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/OtherLiabilitiesOrgGrp/Amt | 0 | 14722 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt | 1 | 12831 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | Accrued payroll |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 1 | Credit Card Balances |
| IRS990ScheduleD/TotalLiabilityAmt | 0 | 27553 |
| IRS990ScheduleF/AccountActivitiesOutsideUSGrp/EmployeeCnt | 0 | 0 |
| IRS990ScheduleF/AccountActivitiesOutsideUSGrp/OfficesCnt | 0 | 0 |
| IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTotalExpendituresAmt | 0 | 104250 |
| IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt | 0 | Europe |
| IRS990ScheduleF/AccountActivitiesOutsideUSGrp/SpecificServicesProvidedTxt | 0 | See Schedule O |
| IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt | 0 | Grants |
| IRS990ScheduleF/BoycottCountriesInd | 0 | false |
| IRS990ScheduleF/ForeignCorpOwnershipInd | 0 | false |
| IRS990ScheduleF/ForeignPartnershipInd | 0 | false |
| IRS990ScheduleF/GrantRecordsMaintainedInd | 0 | true |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt | 0 | 104250 |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt | 0 | Wire Trans |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt | 0 | See Sch O |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt | 0 | Rome, Italy |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/ValuationMethodUsedDesc | 0 | FMV |
| IRS990ScheduleF/InterestInForeignTrustInd | 0 | false |
| IRS990ScheduleF/PassiveForeignInvestmestCoInd | 0 | false |
| IRS990ScheduleF/SubtotalSpentAmt | 0 | 104250 |
| IRS990ScheduleF/Total501c3OrgCnt | 0 | 1 |
| IRS990ScheduleF/TotalSpentAmt | 0 | 104250 |
| IRS990ScheduleF/TransferToForeignCorpInd | 0 | true |
| IRS990ScheduleG/AgrmtProfFundraisingActyInd | 0 | true |
| IRS990ScheduleG/EmailSolicitationsInd | 0 | X |
| IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt | 0 | 215875 |
| IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt | 0 | 81595 |
| IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent2Amt | 0 | 30000 |
| IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriOtherEventsAmt | 0 | 104280 |
| IRS990ScheduleG/FundraisingEventInformationGrp/DirectExpenseSummaryEventsAmt | 0 | 48699 |
| IRS990ScheduleG/FundraisingEventInformationGrp/EntertainmentOtherEventsAmt | 0 | 1110 |
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Displayed year
2019 • Form 990Detailed filing. Detailed filing data is available for this year.