Civic Intelligence

Cure Sanfilippo Foundation Elizas Story

990 • Fiscal year 2019 • EIN 46-4322131

Jan 01, 2019 to Dec 31, 2019 • Filed on Nov 13, 2020

PO Box 6901Columbia, SC 29260

(803) 413-0525

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

9th percentile

0.00x

Higher debt load relative to assets than 9% of similar nonprofits.

2019 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2019

Liabilities / Revenue

10th percentile

0.02x

Higher debt load relative to revenue than 10% of similar nonprofits.

2019 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2019

Net Margin

59th percentile

6.1%

Higher net margin than 59% of similar nonprofits.

2019 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2019

Top Officer Pay

32nd percentile

$130,000

Higher top officer pay than 32% of similar nonprofits.

Top officer pay equals 9.7% of source-year revenue.

2019 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2019

Asset Growth

31st percentile

-0.6%

Faster asset growth than 31% of similar nonprofits.

2019 filings • 501(c)3 • $10M-$25M nonprofits • Annualized from 2018 to 2019

Revenue Growth

8th percentile

-35%

Faster revenue growth than 8% of similar nonprofits.

2019 filings • 501(c)3 • $10M-$25M nonprofits • Annualized from 2018 to 2019

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

Historical Trend

Balance Sheet Trend

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$15M$10M$5.0M$0Assets 2013: $39,500Liabilities 2013: $0Net Assets 2013: $39,5002013Assets 2014: $2,208,202Liabilities 2014: $0Net Assets 2014: $2,208,2022014Assets 2015: $3,213,561Liabilities 2015: $0Net Assets 2015: $3,213,5612015Assets 2016: $4,511,454Liabilities 2016: $0Net Assets 2016: $4,511,4542016Assets 2017: $11,442,880Liabilities 2017: $0Net Assets 2017: $11,442,8802017Assets 2018: $10,817,840Liabilities 2018: $0Net Assets 2018: $10,817,8402018Assets 2019: $10,749,584Liabilities 2019: $27,553Net Assets 2019: $10,722,0312019Assets 2020: $10,163,332Liabilities 2020: $63,451Net Assets 2020: $10,099,8812020Assets 2021: $10,337,575Liabilities 2021: $0Net Assets 2021: $10,337,5752021Assets 2022: $9,625,770Liabilities 2022: $21,192Net Assets 2022: $9,604,5782022Assets 2023: $11,198,610Liabilities 2023: $24,536Net Assets 2023: $11,174,0742023Assets 2024: $13,871,255Liabilities 2024: $135,072Net Assets 2024: $13,736,1832024

Highlighted filing

2019

Assets$10,749,584
Liabilities$27,553
Net Assets$10,722,031

Operations Trend

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$6.0M$4.0M$2.0M$0-$2.0MRevenue 2013: $42,449Expenses 2013: $2,949Net Income 2013: $39,5002013Revenue 2014: $2,348,262Expenses 2014: $179,860Net Income 2014: $2,168,4022014Revenue 2015: $438,943Expenses 2015: $339,313Net Income 2015: $99,6302015Revenue 2016: $601,760Expenses 2016: $295,162Net Income 2016: $306,5982016Revenue 2017: $4,433,546Expenses 2017: $599,120Net Income 2017: $3,834,4262017Revenue 2018: $2,058,979Expenses 2018: $1,153,410Net Income 2018: $905,5692018Revenue 2019: $1,345,798Expenses 2019: $1,263,898Net Income 2019: $81,9002019Revenue 2020: $2,083,251Expenses 2020: $3,140,290Net Income 2020: -$1,057,0392020Revenue 2021: $2,229,880Expenses 2021: $2,586,338Net Income 2021: -$356,4582021Revenue 2022: $2,707,445Expenses 2022: $2,287,097Net Income 2022: $420,3482022Revenue 2023: $2,106,392Expenses 2023: $1,292,685Net Income 2023: $813,7072023Revenue 2024: $2,781,149Expenses 2024: $1,572,959Net Income 2024: $1,208,1902024

Highlighted filing

2019

Revenue$1,345,798
Expenses$1,263,898
Net Income$81,900
Jump To
Filing Snapshot
Filing Period
Jan 1, 2019 to Dec 31, 2019
Signed
Nov 13, 2020
Return Version
2019v5.0
Gross Receipts
$1,394,497
Mission and Program Overview

Mission

SEE ATTACHED STATEMENT

To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome

Balance Sheet Detail
LineBeginningEndChange
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
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Glenn O'NeillExecutive DirectorFT$122,000$8,000$130,000
Katie WaltonVice PresidentFT$78,846-$78,846
Cara O'NeillChief SciencePT$75,000-$75,000

Board Members and Trustees

NameTitle
Daniel FraleyBoard Chair
Adam ShaywitzDirector
Ben Von WongDirector
Faith McAngusDirector
Rachel BestDirector
Valerie ByersDirector
Shelby LeonardiSecretary
Revenue and Support

Revenue Composition

Contributions and Grants
$1,211,874
Program Service Revenue
$0
Investment Income
$127,390
Other Revenue
$6,534
All Other Contributions
$995,999
Change in Net Assets
$81,900
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
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

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
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
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
UNC - Chapel HillChapel Hill, NC-Treating MPS$300,000
University of North CarolinaChapel Hill, NC-Facilitate and enhance the CNS entr$93,400
Lundquist InstituteTorrance, CA-Open-label pilot study$70,000
The Regents of University ofBerkeley, CA-Neural Stem Cells Engineered$47,795
Research Triangle InstituteRaleigh, NC-Caregiver Preference Study$30,761
The Pennsylvania State UniverState College, PA-Role of Autophagy in Mucopolysaccha$30,000

International Summary

Spending
$104,250

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
Yes

International Activities

RegionActivityServicesOfficesEmployeesSpending
EuropeGrantsSee Schedule O00$104,250
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$48,699
Fundraising Gross Income$44,750
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet 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
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Accrued payroll$14,722
Credit Card Balances$12,831
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
Yes
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
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, Line 2: Description of Business or Family Relationship of Officers, Directors, Et

Glenn ONeill and Cara ONeill MD FAAP are husband and wife.

Form 990, Part VI, Line 11B: Form 990 Review Process

All Board Members have reviewed the Form 990.

Form 990, Part VI, Line 12C: Explanation of Monitoring and Enforcement of Conflicts

Conflicts of interest are reviewed during Board Meetings

Form 990, Part VI, Line 15A: Compensation Review & Approval Process - CEO, Top Management

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.

Form 990, Part VI, Line 15B: Compensation Review and Approval Process for Officers and Key Employees

The Employment Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees.

Form 990, Part VI, Line 19: Other Organization Documents Publicly Available

The organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website.

Filing and Contact Details

Filer

Filer Name
Cure Sanfilippo Foundation
EIN
46-4322131
Phone
8034130525
Address
PO Box 6901, Columbia, SC 29260

Signing Officer

Name
Glenn O'Neill
Title
President
Signed
2020-11-13
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Glenn O'Neill
Formed
2013
Legal Domicile
Sc
Voting Board Members
7
Independent Board Members
7
Employees
4
Volunteers
100

Preparer

Firm
The Hobbs Group PA
Address
1704 Laurel Street, Columbia, SC 29201
Preparer
Will Stevens CPA
Phone
8037990555
Supplemental Narrative

Additional Explanations

Caregiver Preference Study

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

Facilitate and enhance the CNS entry of systemically delivered AAV vec

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

Form 990, Part IV, Line 12A - Audited Financial Statements

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.

Grant Detail

The following grants were provided:

Neural Stem Cells Engineered to Produce Sulfamidase for treatment of S

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

New Therpeutic Strategies for the treatment of behavioral symptoms in

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

Open-Label Pilot Study of the effects of Anakinra in MPS III

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

Repositioning of FDA compounds using cell-based high content screening

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

Systemic scAAV9-mCMV-hsGSH gene delivery for treating MPS IIIA

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

Targeting amyloid aggregation as A new therapeutic approach to treat

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

The Role of Autophagy in Mucopolysaccharidoses and Its potential as A

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

Raw XML AppendixShowing 400 of 623 raw XML fields

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/AccountantCompileOrReviewInd0true
IRS990/AccountsReceivableGrp/EOYAmt00
IRS990/AcctCompileOrReviewBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/ActivitiesConductedPrtshpInd0false
IRS990/ActivityOrMissionDesc0To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome
IRS990/AdvertisingGrp/FundraisingAmt08961
IRS990/AdvertisingGrp/ProgramServicesAmt020861
IRS990/AdvertisingGrp/TotalAmt029822
IRS990/AllOtherContributionsAmt0995999
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt03976
IRS990/AllOtherExpensesGrp/ProgramServicesAmt06730
IRS990/AllOtherExpensesGrp/TotalAmt010706
IRS990/AnnualDisclosureCoveredPrsnInd0true
IRS990/AuditCommitteeInd0true
IRS990/BackupWthldComplianceInd0false
IRS990/BenefitsToMembersGrp/TotalAmt00
IRS990/BooksInCareOfDetail/PersonNm0Glenn O'Neill
IRS990/BooksInCareOfDetail/PhoneNum08034130525
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt0PO Box 6901
IRS990/BooksInCareOfDetail/USAddress/CityNm0Columbia
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0SC
IRS990/BooksInCareOfDetail/USAddress/ZIPCd029260
IRS990/BusinessRlnWith35CtrlEntInd0false
IRS990/BusinessRlnWithFamMemInd0false
IRS990/BusinessRlnWithOrgMemInd0false
IRS990/CashNonInterestBearingGrp/BOYAmt01221712
IRS990/CashNonInterestBearingGrp/EOYAmt0480676
IRS990/ChangeToOrgDocumentsInd0false
IRS990/CntrctRcvdGreaterThan100KCnt00
IRS990/CollectionsOfArtInd0false
IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt056769
IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt042577
IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt0184500
IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt0283846
IRS990/CompDisqualPersonsGrp/TotalAmt00
IRS990/CompensationFromOtherSrcsInd0false
IRS990/CompensationProcessCEOInd0true
IRS990/CompensationProcessOtherInd0true
IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt02633
IRS990/ConferencesMeetingsGrp/ProgramServicesAmt02532
IRS990/ConferencesMeetingsGrp/TotalAmt05165
IRS990/ConflictOfInterestPolicyInd0true
IRS990/ConservationEasementsInd0false
IRS990/ConsolidatedAuditFinclStmtInd0false
IRS990/ContriRptFundraisingEventAmt0215875
IRS990/CreditCounselingInd0false
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt01211874
IRS990/CYGrantsAndSimilarPaidAmt0676206
IRS990/CYInvestmentIncomeAmt0127390
IRS990/CYOtherExpensesAmt0186207
IRS990/CYOtherRevenueAmt06534
IRS990/CYProgramServiceRevenueAmt00
IRS990/CYRevenuesLessExpensesAmt081900
IRS990/CYSalariesCompEmpBnftPaidAmt0401485
IRS990/CYTotalExpensesAmt01263898
IRS990/CYTotalFundraisingExpenseAmt0120939
IRS990/CYTotalProfFndrsngExpnsAmt00
IRS990/CYTotalRevenueAmt01345798
IRS990/DecisionsSubjectToApprovaInd0false
IRS990/DeductibleArtContributionInd0false
IRS990/DeductibleNonCashContriInd0false
IRS990/DelegationOfMgmtDutiesInd0false
IRS990/DepreciationDepletionGrp/TotalAmt00
IRS990/Desc0To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome
IRS990/DescribedInSection501c3Ind0true
IRS990/DisregardedEntityInd0false
IRS990/DocumentRetentionPolicyInd0true
IRS990/DonorAdvisedFundInd0false
IRS990/DonorRstrOrQuasiEndowmentsInd0false
IRS990/ElectionOfBoardMembersInd0false
IRS990/EmployeeCnt04
IRS990/EmploymentTaxReturnsFiledInd0true
IRS990/EngagedInExcessBenefitTransInd0false
IRS990/ExpenseAmt01057881
IRS990/FamilyOrBusinessRlnInd0true
IRS990/FederalGrantAuditRequiredInd0false
IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt015275
IRS990/FeesForServicesAccountingGrp/TotalAmt015275
IRS990/FeesForServicesLegalGrp/ProgramServicesAmt022995
IRS990/FeesForServicesLegalGrp/TotalAmt022995
IRS990/FeesForServicesLobbyingGrp/TotalAmt00
IRS990/FeesForServicesManagementGrp/TotalAmt00
IRS990/FeesForServicesOtherGrp/TotalAmt00
IRS990/FeesForServicesProfFundraising/TotalAmt00
IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt00
IRS990/ForeignActivitiesInd0true
IRS990/ForeignFinancialAccountInd0false
IRS990/ForeignGrantsGrp/ProgramServicesAmt0104250
IRS990/ForeignGrantsGrp/TotalAmt0104250
IRS990/ForeignOfficeInd0false
IRS990/Form1098CFiledInd0false
IRS990/Form8282FiledCnt00
IRS990/Form8282PropertyDisposedOfInd0false
IRS990/Form8899Filedind0false
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt00.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt10.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt20.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt30.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt40.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt50.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt60.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt70.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt80.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt90.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt050.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt140.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt225.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt35.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt45.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt55.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt65.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt75.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt85.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt95.00
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd0X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd1X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd2X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd3X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd4X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd5X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd6X
IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
IRS990/Form990PartVIISectionAGrp/OfficerInd2X
IRS990/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OfficerInd4X
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt08000
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt10
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt70
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt80
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/PersonNm0Glenn O'Neill
IRS990/Form990PartVIISectionAGrp/PersonNm1Katie Walton
IRS990/Form990PartVIISectionAGrp/PersonNm2Cara O'Neill
IRS990/Form990PartVIISectionAGrp/PersonNm3Daniel Fraley
IRS990/Form990PartVIISectionAGrp/PersonNm4Rachel Best
IRS990/Form990PartVIISectionAGrp/PersonNm5Faith McAngus
IRS990/Form990PartVIISectionAGrp/PersonNm6Shelby Leonardi
IRS990/Form990PartVIISectionAGrp/PersonNm7Valerie Byers
IRS990/Form990PartVIISectionAGrp/PersonNm8Ben Von Wong
IRS990/Form990PartVIISectionAGrp/PersonNm9Adam Shaywitz
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt0122000
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt178846
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt275000
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
IRS990/Form990PartVIISectionAGrp/TitleTxt0Executive Dir.
IRS990/Form990PartVIISectionAGrp/TitleTxt1Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt2Chief Science
IRS990/Form990PartVIISectionAGrp/TitleTxt3Board Chair
IRS990/Form990PartVIISectionAGrp/TitleTxt4Director
IRS990/Form990PartVIISectionAGrp/TitleTxt5Director
IRS990/Form990PartVIISectionAGrp/TitleTxt6Secretary
IRS990/Form990PartVIISectionAGrp/TitleTxt7Director
IRS990/Form990PartVIISectionAGrp/TitleTxt8Director
IRS990/Form990PartVIISectionAGrp/TitleTxt9Director
IRS990/Form990ProvidedToGvrnBodyInd0true
IRS990/FormationYr02013
IRS990/FormerOfcrEmployeesListedInd0false
IRS990/FSAuditedInd0false
IRS990/FundraisingActivitiesInd0true
IRS990/FundraisingAmt0215875
IRS990/FundraisingDirectExpensesAmt048699
IRS990/FundraisingGrossIncomeAmt044750
IRS990/GamingActivitiesInd0false
IRS990/GoverningBodyVotingMembersCnt07
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt00
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0571956
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0571956
IRS990/GrantsToIndividualsInd0false
IRS990/GrantsToOrganizationsInd0true
IRS990/GrantToRelatedPersonInd0false
IRS990/GrossReceiptsAmt01394497
IRS990/GroupReturnForAffiliatesInd0false
IRS990/IncludeFIN48FootnoteInd0false
IRS990/IncmFromInvestBondProceedsGrp/TotalRevenueColumnAmt00
IRS990/IndependentAuditFinclStmtInd0false
IRS990/IndependentVotingMemberCnt07
IRS990/IndivRcvdGreaterThan100KCnt01
IRS990/IndoorTanningServicesInd0false
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/ProgramServicesAmt0141
IRS990/InformationTechnologyGrp/TotalAmt0141
IRS990/InsuranceGrp/ManagementAndGeneralAmt02944
IRS990/InsuranceGrp/TotalAmt02944
IRS990/IntangibleAssetsGrp/EOYAmt00
IRS990/InterestGrp/TotalAmt00
IRS990/InventoriesForSaleOrUseGrp/EOYAmt00
IRS990/InvestmentExpenseAmt0-7492
IRS990/InvestmentIncomeGrp/RelatedOrExemptFuncIncomeAmt0127390
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt0127390
IRS990/InvestmentInJointVentureInd0false
IRS990/InvestmentsOtherSecuritiesGrp/EOYAmt00
IRS990/InvestmentsProgramRelatedGrp/EOYAmt00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt07161107
IRS990/InvestmentsPubTradedSecGrp/EOYAmt07276193
IRS990/IRPDocumentCnt00
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipBasisNetGrp/EOYAmt00
IRS990/LegalDomicileStateCd0SC
IRS990/LoanOutstandingInd0false
IRS990/LobbyingActivitiesInd0false
IRS990/LocalChaptersInd0false
IRS990/MaterialDiversionOrMisuseInd0false
IRS990/MembersOrStockholdersInd0false
IRS990/MethodOfAccountingCashInd0X
IRS990/MinutesOfCommitteesInd0true
IRS990/MinutesOfGoverningBodyInd0true
IRS990/MissionDesc0To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome
IRS990/MoreThan5000KToIndividualsInd0false
IRS990/MoreThan5000KToOrgInd0true
IRS990/NetAssetsOrFundBalancesBOYAmt010817840
IRS990/NetAssetsOrFundBalancesEOYAmt010722031
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt00
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt0-3949
IRS990/NetIncomeFromGamingGrp/TotalRevenueColumnAmt00
IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt00
IRS990/NetRentalIncomeOrLossGrp/TotalRevenueColumnAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-148075
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt010817840
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt010722031
IRS990/NoncashContributionsAmt01783
IRS990/NondeductibleContributionsInd0false
IRS990/OccupancyGrp/ProgramServicesAmt011375
IRS990/OccupancyGrp/TotalAmt011375
IRS990/OfficeExpensesGrp/ProgramServicesAmt09075
IRS990/OfficeExpensesGrp/TotalAmt09075
IRS990/OfficerMailingAddressInd0false
IRS990/OperateHospitalInd0false
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/EOYAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt06496
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt04872
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt021111
IRS990/OtherEmployeeBenefitsGrp/TotalAmt032479
IRS990/OtherExpensesGrp/Desc0Events
IRS990/OtherExpensesGrp/Desc1Web Service
IRS990/OtherExpensesGrp/Desc2Printing and Publications
IRS990/OtherExpensesGrp/Desc3Taxes
IRS990/OtherExpensesGrp/FundraisingAmt031424
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt08294
IRS990/OtherExpensesGrp/ProgramServicesAmt011379
IRS990/OtherExpensesGrp/ProgramServicesAmt14429
IRS990/OtherExpensesGrp/TotalAmt031424
IRS990/OtherExpensesGrp/TotalAmt111379
IRS990/OtherExpensesGrp/TotalAmt28294
IRS990/OtherExpensesGrp/TotalAmt34429
IRS990/OtherLiabilitiesGrp/EOYAmt027553
IRS990/OtherRevenueMiscGrp/Desc0Billable Expenditure Rev
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt010483
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt010483
IRS990/OtherRevenueTotalAmt010483
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt010867
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt08151
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt035319
IRS990/OtherSalariesAndWagesGrp/TotalAmt054337
IRS990/OthNotesLoansReceivableNetGrp/EOYAmt00
IRS990/PartialLiquidationInd0false
IRS990/PaymentsToAffiliatesGrp/TotalAmt00
IRS990/PayPremiumsPrsnlBnftCntrctInd0false
IRS990/PayrollTaxesGrp/FundraisingAmt05683
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt04262
IRS990/PayrollTaxesGrp/ProgramServicesAmt018471
IRS990/PayrollTaxesGrp/TotalAmt028416
IRS990/PensionPlanContributionsGrp/FundraisingAmt0739
IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt0279
IRS990/PensionPlanContributionsGrp/ProgramServicesAmt01389
IRS990/PensionPlanContributionsGrp/TotalAmt02407
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt00
IRS990/PoliticalCampaignActyInd0false
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt00
IRS990/PrincipalOfficerNm0Glenn O'Neill
IRS990/PriorPeriodAdjustmentsAmt0-22142
IRS990/ProfessionalFundraisingInd0false
IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt01748376
IRS990/PYExcessBenefitTransInd0false
IRS990/PYGrantsAndSimilarPaidAmt0636976
IRS990/PYInvestmentIncomeAmt031628
IRS990/PymtTravelEntrtnmntPubOfclGrp/TotalAmt00
IRS990/PYOtherExpensesAmt0229815
IRS990/PYOtherRevenueAmt0278975
IRS990/PYRevenuesLessExpensesAmt0905569
IRS990/PYSalariesCompEmpBnftPaidAmt0286619
IRS990/PYTotalExpensesAmt01153410
IRS990/PYTotalRevenueAmt02058979
IRS990/QuidProQuoContributionsInd0false
IRS990/RcvblFromDisqualifiedPrsnGrp/EOYAmt00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReceivablesFromOfficersEtcGrp/EOYAmt00
IRS990/ReconcilationRevenueExpnssAmt081900
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0false
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0true
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RoyaltiesGrp/TotalAmt00
IRS990/RoyaltiesRevenueGrp/TotalRevenueColumnAmt00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt02435021
IRS990/SavingsAndTempCashInvstGrp/EOYAmt02992715
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt01256624
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt02052054
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt01515412
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0636440
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0582508
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt06043038
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt00
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt0127390
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt031628
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt02943703
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt01521
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt0-120540
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt02983702
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt010483
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt0791
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt080
IRS990ScheduleA/OtherIncome170Grp/TotalAmt0871
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.66940
IRS990ScheduleA/PublicSupportPY170Pct00.71730
IRS990ScheduleA/PublicSupportTotal170Amt06043038
IRS990ScheduleA/SubstantialContributorsTotAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt01256624
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt02052054
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt01515412
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0636440
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0582508
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt06043038
IRS990ScheduleA/TotalSupportAmt09027611
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt00
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
IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt014722
IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt112831
IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc0Accrued payroll
IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc1Credit Card Balances
IRS990ScheduleD/TotalLiabilityAmt027553
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/EmployeeCnt00
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/OfficesCnt00
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTotalExpendituresAmt0104250
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt0Europe
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/SpecificServicesProvidedTxt0See Schedule O
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt0Grants
IRS990ScheduleF/BoycottCountriesInd0false
IRS990ScheduleF/ForeignCorpOwnershipInd0false
IRS990ScheduleF/ForeignPartnershipInd0false
IRS990ScheduleF/GrantRecordsMaintainedInd0true
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt0104250
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt0Wire Trans
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0See Sch O
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt0Rome, Italy
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/ValuationMethodUsedDesc0FMV
IRS990ScheduleF/InterestInForeignTrustInd0false
IRS990ScheduleF/PassiveForeignInvestmestCoInd0false
IRS990ScheduleF/SubtotalSpentAmt0104250
IRS990ScheduleF/Total501c3OrgCnt01
IRS990ScheduleF/TotalSpentAmt0104250
IRS990ScheduleF/TransferToForeignCorpInd0true
IRS990ScheduleG/AgrmtProfFundraisingActyInd0true
IRS990ScheduleG/EmailSolicitationsInd0X
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt0215875
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt081595
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent2Amt030000
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriOtherEventsAmt0104280
IRS990ScheduleG/FundraisingEventInformationGrp/DirectExpenseSummaryEventsAmt048699
IRS990ScheduleG/FundraisingEventInformationGrp/EntertainmentOtherEventsAmt01110

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings