Civic Intelligence

Cure Sanfilippo Foundation

EIN 46-4322131 • 501(c)3 • Columbia, SC

Profile

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

PO Box 6901Columbia, SC 29260

www.curesanfilippofoundation.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

16th percentile

0.01x

Higher debt load relative to assets than 16% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Liabilities / Revenue

20th percentile

0.05x

Higher debt load relative to revenue than 20% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Net Margin

87th percentile

43%

Higher net margin than 87% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Top Officer Pay

74th percentile

$161,106

Higher top officer pay than 74% of similar nonprofits.

Top officer pay equals 5.8% of source-year revenue.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Asset Growth

83rd percentile

24%

Faster asset growth than 83% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2023 to 2024

Revenue Growth

81st percentile

32%

Faster revenue growth than 81% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets16th percentile

Assets

Up

$13,871,255

Up $2,672,645 (+24%) from 2023

Liabilities

Up

$135,072

Up $110,536 (+451%) from 2023

Net Assets

Up

$13,736,183

Up $2,562,109 (+23%) from 2023

Operations
Liabilities / Revenue20th percentileNet Margin87th percentile

Revenue

Up

$2,781,149

Up $674,757 (+32%) from 2023

Expenses

Up

$1,572,959

Up $280,274 (+22%) from 2023

Net Income

Up

$1,208,190

Up $394,483 (+48%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth83rd percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$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

2024

Assets$13,871,255
Liabilities$135,072
Net Assets$13,736,183
Open 2024 Filing

Operations Trend

Revenue Growth81st percentile

Revenue, expenses, and net income by year, with the latest 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

2024

Revenue$2,781,149
Expenses$1,572,959
Net Income$1,208,190
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$13,871,255
Liabilities
$135,072
Net assets
$13,736,183
Revenue
$2,781,149
Expenses
$1,572,959
Net income
$1,208,190
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$13.9$0.14$13.7$2.78$1.57$1.21
2023Detailed filing. Detailed filing data is available for this year.$11.2$0.02$11.2$2.11$1.29$0.81
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$9.63$0.02$9.60$2.71$2.29$0.42
2021Detailed filing. Detailed filing data is available for this year.$10.3$0.00$10.3$2.23$2.59$0.36
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$10.2$0.06$10.1$2.08$3.14$1.06
2019Detailed filing. Detailed filing data is available for this year.$10.7$0.03$10.7$1.35$1.26$0.08
2018Detailed filing. Detailed filing data is available for this year.$10.8$0.00$10.8$2.06$1.15$0.91
2017Detailed filing. Detailed filing data is available for this year.$11.4$0.00$11.4$4.43$0.60$3.83
2016Summary only. Only limited summary data is available for this year.$4.51$0.00$4.51$0.60$0.30$0.31
2015Detailed filing. Detailed filing data is available for this year.$3.21$0.00$3.21$0.44$0.34$0.10
2014Detailed filing. Detailed filing data is available for this year.$2.21$0.00$2.21$2.35$0.18$2.17
2013Detailed filing. Detailed filing data is available for this year.$0.04$0.00$0.04$0.04$0.00$0.04
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 7, 2025
Return Version
2024v5.2
Gross Receipts
$3,143,445
Mission and Program Overview

Mission

SEE ATTACHED STATEMENT

To accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo syndrome, drive advocacy to improve care and outcomes, and empower families with information, guidance, and support to navigate the journey.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$9,240,516$10,235,625▲ $995,109
Cash and Non-Interest-Bearing Accounts$1,829,121$2,399,469▲ $570,348
Accounts Receivable$54,790$90,287▲ $35,497
Savings and Temporary Cash Investments$66,283$73,091▲ $6,808
Prepaid Expenses and Deferred Charges$7,900$15,837▲ $7,937
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-
Total Assets$11,198,610$13,871,255▲ $2,672,645
Other Assets Total-$1,056,946-
Liabilities
Accounts Payable and Accrued Expenses$24,536$135,072▲ $110,536
Total Liabilities$24,536$135,072▲ $110,536
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$11,174,074$13,736,183▲ $2,562,109
Total Net Assets Fund Balance$11,174,074$13,736,183▲ $2,562,109
Total Liabilities and Net Assets / Fund Balance$11,198,610$13,871,255▲ $2,672,645

Asset Categories

AssetBook ValueDepreciationBasis
Other Assets Org$1,056,946--
Compensation and Service Providers
Top Officer Pay74th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Glenn O'NeillExe Dir/PresFT$139,049$22,057$161,106
Cara O'NeillChief ScienceFT$124,759$21,437$146,196
Katie WaltonVice PresidentFT$118,051$4,676$122,727

Board Members and Trustees

NameTitle
Daniel FraleyBoard Chair
Adam ShaywitzDirector
Ben Von WongDirector
Faith McAngusDirector
Jessica HaywoodDirector
Mike LykesDirector
Shelby LeonardiSecretary
Revenue and Support

Revenue Composition

Contributions and Grants
$2,221,552
Program Service Revenue
$0
Investment Income
$580,274
Other Revenue
$-20,677
All Other Contributions
$1,704,652
Change in Net Assets
$1,208,190

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,763,203
Revenue Not Reported on Financial Statements
$17,946
Revenue Not Reported on Form 990
$454,995
Total Revenue per Audited Statements
$3,218,198
Total Revenue per Form 990
$2,781,149
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$643,960
Salaries, Compensation, and Employee Benefits$630,558
Other Expenses$298,441
Total Fundraising Expense$146,325
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Foreign Grants$388,420--$388,420
Current Officers, Directors, Trustees, and Key Employees$248,209$57,278$76,372$381,859
Grants to Domestic Orgs$255,540--$255,540
Other Salaries and Wages$94,196$21,739$28,983$144,918
Fees for Services Legal$93,539$31,180-$124,719
Other Employee Benefits$31,140$7,186$9,582$47,908
Payroll Taxes$24,639$5,686$7,581$37,906
Advertising$22,644-$9,705$32,349
Travel$23,697$7,900-$31,597
All Other Expenses$10,835$7,119$444$18,398
Pension Plan Contributions$11,679$2,695$3,593$17,967
Fees for Services Accounting-$10,935-$10,935
Other Expenses$8,074$2,691$2,535$10,765
Office Expenses$6,366$1,469$1,960$9,795
Conferences and Meetings$6,012$1,387$1,850$9,249
Insurance-$4,806-$4,806
Total Functional Expenses$1,259,871$166,763$146,325$1,572,959

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,661,285
Expenses per Audited Statements$1,572,959
Total Expenses per Form 990$1,572,959
Expenses Not Reported on Form 990$88,326
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Regents of UC - San DiegoLa Jolla, CA-Treating Mucopolysaccharidosis$120,000
University of GeorgiaAthens, GA-Peropheral Neural Stem Cell Models$49,976
Regents of UC - San DiegoLa Jolla, CA-Blood-based biomarkers$43,065
Clemson UniversityClemson, SC-Neuroprotective peptides for treatm$42,500

International Summary

Spending
$388,420

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$201,768
AustraliaGrantsSee Schedule O00$123,652
North AmericaGrantsSee Schedule O00$63,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$88,326
Fundraising Gross Income$52,962
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Golf Event$188,000$18,200$70$18,130
Golf/Auction$202,126$11,340-$11,340
Total Events$569,862$52,962$88,326$-35,364
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-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
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, Section A, Line 2

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

Form 990, Part VI, Section B, Line 11B

“All Board Members have reviewed the Form 990.”

Form 990, Part VI, Section B, Line 12C

“Conflicts of interest are reviewed during Board Meetings”

Form 990, Part VI, Section B, Line 15A

“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, Section B, Line 15B

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

Form 990, Part VI, Section C, Line 19

“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
2025-11-07
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
5

Preparer

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

Additional Explanations

Blood-based biomarkers for Sanfilippo syndrome progression and treatme

“TITLE:Blood-based biomarkers for Sanfilippo syndrome progression and treatmentAwardee: The Regents of the University of CaliforniaAMOUNT IN 2024: $43,064.50Date: Payments made in August 19,2024.”

Combination of HSCP transplantation and cathepsin B inhibitors for tre

“TITLE: Combination of HSCP transplantation and cathepsin B inhibitors for treatment of Sanfilippo diseaseAwardee: Centre Hospitalier Universitaire Sainte-Justine (CHU Sainte-Justine)Amount in 2024: $63,000Date: December 5, 2024.”

Discovery and validation of translational biomarkers for Sanfilippo ch

“TITLE: Discovery and validation of translational biomarkers for Sanfilippo childhood dementiaAwardee: Monash University Amount in 2024: $87,500.00Date: June 24, 2024, June 25, 2024, October 1,2024 and November 15,2024.”

Grant Detail

“The following grants were provided:”

Neuroprotective Peptides for Treatment

“TITLE: Swift in vitro evaluation of disease-modifying drugs for attenuated forms of SanfilippoAwardee: Flinders UniversityAMOUNT IN 2024: $36,152.00Date: Payments made in May 14,2024.”

Neuroprotective Peptides for Treatment of Sanfilippo Disease

“TITLE: Neuroprotective Peptides for Treatment of Sanfilippo DiseaseAwardee: Phoenix NestAMOUNT IN 2024: $51,750.00Date: Payments made in May 20,2024.”

Peripheral Neural Stem Cell Models and Drug Discovery for Sanfilippo S

“TITLE: Peripheral Neural Stem Cell Models and Drug Discovery for Sanfilippo SyndromeAwardee: University of GeorgiaAmount in 2024: $49,976.00Date: May 17, 2024 and December 17, 2024.”

Pharmacological chaperone and substrate reduction therapy with N-subst

“TITLE: Pharmacological chaperone and substrate reduction therapy with N-substituted L-iminosugars for the treatment of Sanfilippo B diseaseAwardee: University of Naples Federico IIstitAMOUNT IN 2024: $25,000.00Date: May 20, 2024.”

Pre-clinical evaluation of an iPSC-based therapeutic modality to rescu

“TITLE: Pre-clinical evaluation of an iPSC-based therapeutic modality to rescue MPS IIA neuropathology, and characterization of MPS IIIC iPSC neural progenitor cells Awardee: The University of Manchester Amount in 2024: $40,419.14Date: May 14,2024 and December 3,2024.”

Prior Period Adjustments

“During the current year it was discoverd that the issuance of a convertible note and its subsequent conversion into common shares was not accounted for correctly in prior periods.The Foundation has restated the opening balances of net assets and accounts receivable as of January 1, 2024, to reflect the impact of recognizing the convertible promissory note and related entries in the audit. This adjustment has been applied to the Form 990 as a Prior Period Adjustment.”

Strengthening the rationale for the use of the "molecular tweezer" CLR

“TITLE: Strengthening the rationale for the use of the "molecular tweezer" CLR01 in the treatment of Sanfilippo syndromeAWARDEE: Ceinge BiotechAMOUNT IN 2024: $56,250.00Date: June 14, 2024.”

Susequent Event

“The gene therapy vector production project for Sanfilippo syndrome at the University of North Carolina at Chapel Hill, which Cure Sanfilippo Foundation was supporting, encountered production challenges and has been discontinued. The Foundations investments in the project have been recovered and the matter has been resolved.”

Targeting Heparan Sulfate Proteoglycans as A Novel Therapeutic Strateg

“TITLE: Targeting Heparan Sulfate Proteoglycans as a Novel Therapeutic Strategy for Sanfilippo diseasesAwardee: University of Naples Federico II (UNINA)AMOUNT IN 2024: $40,000.00Date: Payments made in October 18, 2024.”

The role of heparan sulfate and dopamine as disease modifiers in Mucop

“TITLE: The role of heparan sulfate and dopamine as disease modifiers in Mucopolysaccharidosis type IIIAAwardee: Telethon Institute of Genetic and Medicine (TIGEM)AMOUNT IN 2024: $40,098.75Date: June 14, 2024.”

Treating Mucopolysaccharidosis Type IIIC with Hematopoietic Stem Cell

“TITLE: Treating Mucopolysaccharidosis Type IIIC with Hematopoietic Stem Cell Gene TherapyAwardee: The Regents of the University of California (UCSD)Amount in 2024: $120,000Date: April 22,2024 and December 3,2024.”

Financial Statement Notes

Part X : FIN48 Footnote

“The foundation has received a determination letter from the IRS indicating it is a tax-exempt organization under Section 501(c)(3) of the IRC and is subject to federal income tax only on unrelated business income. Management is not aware of any transactions that would jeopardize their tax-exempt status. Accounting principles generally accepted in the USA require management to evaluate tax positions taken by the Foundation and to recognize tax liability (or asset) if the Foundation has taken an uncertain position that more likely than not would not be sustained upon examination by the IRS. Management has analyzed the tax position taken by the foundationand has concluded that as of December 31, 2024 & 2023, there are no uncertain positions taken or expected to be taken that would require recognition of a liability (or asset) or disclosure in the financial statements. The Foundation is subject to routine audits by taxing jurisdictions; however, there are currently no audits for any tax periods in progress. Management believes it is no longer subject to income tax examinations for fiscal years prior to 2020. US State jurisdictions have statutes of limitations that generally range from 3-5 years.”

Part XI, Line 2D: Other revenue amounts included in F/S but not included on form 990

“Fundraising Expenses $88326”

Part XII, Line 2D: Other expenses and losses per audited F/S

“Fundraising Expenses $88326”

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