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US nonprofit · EIN 464322131 · Columbia, SCiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 464322131) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe tenure.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2024: assets, liabilities, staff, website, telephone, pay, related organisations (Schedule R), grants paid (Schedule I).Finances by year IRS Form 990 e-file data - total revenue and total expenses by tax year.Renewal outlook Computed by Governance Register from the observed filing history and filed revenue (us-approach-v4-clean). Not a statement that the organisation is recruiting.Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Cure Sanfilippo Foundation

Donations deductible
Revenue
$2.8m
year to 31 December 2024
Expenses
$1.6m
year to 31 December 2024
Total assets
$13.9m
$135k liabilities
Net assets
$13.7m
assets less liabilities
Directors and trustees
7
6.4y av
Staff
5
employees, year to 31 December 2024
Chair observed
≥5 yrs
Daniel Fraley
Left since last filing
0
no seats appear to have opened
How am I connected?

Cure Sanfilippo Foundation's network

7 people1 organisationi7 people and 1 organisation on this map.The large node is the subject of this page. Solid lines are what the register itself records (7). Violet dotted lines (1) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.

The board

7 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 7 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Daniel Fraley ChairBoard Chair2019
7 yrs
Adam ShaywitzDirector2019
7 yrs
Ben Von WongDirector2018
8 yrs
Faith McAngusDirector2018
8 yrs
Jessica HaywoodDirector2023
3 yrs
Mike LykesDirector2024
2 yrs
Shelby LeonardiCompany secretary2019
7 yrs
Under 5 years5 to 6 years6 years or more

Officers and senior leadership

5 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.
NameTitle as filedOn the filings
Cara O'NeillChief Sciencesince 2018
Daniel FraleyBoard Chair2018
Glenn O'NeillExecutive Dir.since 2018
Katie WaltonVice Presidentsince 2019
Shelby LeonardyCompany secretary2018

Pay and hours

year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Glenn O'NeillExe Dir/Pres50$139k$22k
Cara O'NeillChief Science40$125k$21k
Katie WaltonVice President40$118k$5k
Daniel FraleyBoard Chair2$0
Jessica HaywoodDirector2$0
Faith McAngusDirector2$0
Shelby LeonardiSecretary2$0
Mike LykesDirector2$0
Ben Von WongDirector2$0
Adam ShaywitzDirector2$0

Colorado roster

14 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253034672). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.
NameTitle as filed
Lindsey ShealySenior Development Manager
Adam SchywitzDirector
Kassidie ReynoldsCommunity Outreach & Education Coordinator
Glenn O'neillPresident/ Exe Dir
Daniel FraleyBoard Chair & Treasurer, Director
Jessica HaywoodDirector
Faith McAngusDirector
Katie WaltonVP of Marketing
Mike LykesDirectors
Directors Board of
Glenn O'neillPresident
Shelby LeonardiSecretary/Director
Cara O'neillChief Science Officer
Ben von WongDirector

About

Legal name
Cure Sanfilippo Foundation
EIN
464322131
Address
6048 Cedar Ridge Rd, Columbia, SC, 29206-4302
State
South Carolina
Mission
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. (as filed on the Form 990)
Activity (NTEE)
H80 Medical research
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Medical Research
Size band
8 (IRS master file code)
Formed
2013
Principal officer
Glenn O'Neill (as named on the Form 990)
IRS ruling date
1 March 2014
Status
Code 01 (unconditional exemption)
Form 990 filings on record
6, latest 2024
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥8years on the filingsBen Von Wong
≥8years on the filingsFaith McAngus
≥7years on the filingsDaniel Fraley
≥7years on the filingsAdam Shaywitz

Latest return

year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.
Total assets
$13.9m
Total liabilities
$135k
Net assets or fund balances
$13.7m
Contributions and grants received
$2.2m
Program service revenue
$0
Grants and similar paid out
$644k
Employees
5

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$2.8m$1.6m$1.2m

As filed on the IRS Form 990. US dollars.

Grants paid

4 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.
RecipientPurposeAmount
Regents of UC - San DiegoTreating Mucopolysaccharidosis$120k
University of GeorgiaPeropheral Neural Stem Cell Models$50k
Regents of UC - San DiegoBlood-based biomarkers$43k
Clemson UniversityNeuroprotective peptides for treatm$43k

State registration

1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.
Cure Sanfilippo Foundation likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Colorado Secretary of State (CDOS), business entities (data.colorado.gov 4ykn-tg5h). Licence: public domain. Data last fetched 18 October 2026.
State
Colorado
Entity type
nonprofit corporation
Status
Good Standing
Formed
25 March 2026
Registered agent
URS Agents, LLC. (city and state not held)

This register does not publish officers or directors.