Totals
- Total revenue
- $2,781,149
- Total expenses
- $1,572,959
- Contributions and grants received
- $2,221,552
- Grants paid
- $643,960
- Program service revenue
- $0
- Investment income
- $580,274
- Other revenue
- -$20,677
- Total assets, end of year
- $13,871,255
- Total liabilities, end of year
- $135,072
- Net assets or fund balances, end of year
- $13,736,183
- Program services expenses (Part IX)
- $1,259,871
- Management and general expenses
- $166,763
- Fundraising expenses
- $146,325
- Program service expenses (Part III)
- $1,259,871
Program services were 80.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1c · Fundraising events
$516,900
-
1f · All other contributions, gifts and grants
$1,704,652
-
3 · Investment income
total $372,815 · related or exempt $372,815
-
4 · Income from investment of tax-exempt bond proceeds
total $0
-
5 · Royalties
total $0
-
6d · Net rental income or loss
total $0
-
7a · Gross sales of assets other than inventory
securities $481,429
-
7b · Less cost or other basis and sales expenses
securities $273,970
-
7c · Gain or loss
securities $207,459
-
7d · Net gain or loss
total $207,459 · related or exempt $207,459
-
8a · Fundraising events: gross income
$52,962
-
8a · Fundraising events: contributions included on line 1c
$516,900
-
8b · Fundraising events: direct expenses
$88,326
-
8c · Net income from fundraising events
total -$35,364
-
9c · Net income from gaming
total $0
-
10c · Net income from sales of inventory
total $0
-
11a · Other revenue: Bank Cash Back
total $3,037 · related or exempt $3,037
-
11b · Other revenue: Refund Credit
total $1,650 · related or exempt $1,650
-
11c · Other revenue: Sales
total $10,000 · related or exempt $10,000
-
11e · Other revenue, total
$14,687
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $255,540 · program services $255,540
-
2 · Grants to domestic individuals
total $0
-
3 · Grants to foreign organizations and individuals
total $388,420 · program services $388,420
-
4 · Benefits paid to or for members
total $0
-
5 · Compensation of officers, directors and key employees
total $381,859 · program services $248,209 · management and general $57,278 · fundraising $76,372
-
6 · Compensation of disqualified persons
total $0
-
7 · Other salaries and wages
total $144,918 · program services $94,196 · management and general $21,739 · fundraising $28,983
-
8 · Pension plan contributions
total $17,967 · program services $11,679 · management and general $2,695 · fundraising $3,593
-
9 · Other employee benefits
total $47,908 · program services $31,140 · management and general $7,186 · fundraising $9,582
-
10 · Payroll taxes
total $37,906 · program services $24,639 · management and general $5,686 · fundraising $7,581
-
11a · Fees: management
total $0
-
11b · Fees: legal
total $124,719 · program services $93,539 · management and general $31,180
-
11c · Fees: accounting
total $10,935 · management and general $10,935
-
11d · Fees: lobbying
total $0
-
11e · Fees: professional fundraising services
total $0
-
11f · Fees: investment management
total $0
-
11g · Fees: other
total $0
-
12 · Advertising and promotion
total $32,349 · program services $22,644 · fundraising $9,705
-
13 · Office expenses
total $9,795 · program services $6,366 · management and general $1,469 · fundraising $1,960
-
14 · Information technology
total $0
-
15 · Royalties
total $0
-
16 · Occupancy
total $0
-
17 · Travel
total $31,597 · program services $23,697 · management and general $7,900
-
18 · Travel or entertainment for public officials
total $0
-
19 · Conferences, conventions and meetings
total $9,249 · program services $6,012 · management and general $1,387 · fundraising $1,850
-
20 · Interest
total $0
-
21 · Payments to affiliates
total $0
-
22 · Depreciation, depletion and amortization
total $0
-
23 · Insurance
total $4,806 · management and general $4,806
-
24a · Other expenses: Contractors
total $18,599 · program services $12,089 · management and general $2,790 · fundraising $3,720
-
24b · Other expenses: Program Expense
total $14,554 · program services $14,554
-
24c · Other expenses: Rent/Lease
total $12,675 · program services $8,238 · management and general $1,902 · fundraising $2,535
-
24d · Other expenses: Web Service
total $10,765 · program services $8,074 · management and general $2,691
-
24e · All other expenses
total $18,398 · program services $10,835 · management and general $7,119 · fundraising $444
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,829,121 · end of year $2,399,469
-
2 · Savings and temporary cash investments
beginning of year $66,283 · end of year $73,091
-
3 · Pledges and grants receivable
end of year $0
-
4 · Accounts receivable
beginning of year $54,790 · end of year $90,287
-
5 · Loans and receivables from officers and key people
end of year $0
-
6 · Loans and receivables from disqualified persons
end of year $0
-
7 · Other notes and loans receivable
end of year $0
-
8 · Inventories for sale or use
end of year $0
-
9 · Prepaid expenses and deferred charges
beginning of year $7,900 · end of year $15,837
-
10c · Land, buildings and equipment, net
end of year $0
-
11 · Investments: publicly traded securities
beginning of year $9,240,516 · end of year $10,235,625
-
12 · Investments: other securities
end of year $0
-
13 · Investments: program-related
end of year $0
-
14 · Intangible assets
end of year $0
-
15 · Other assets
end of year $1,056,946
-
17 · Accounts payable and accrued expenses
beginning of year $24,536 · end of year $135,072
-
27 · Net assets without donor restrictions
beginning of year $11,174,074 · end of year $13,736,183
Mission and programs · 2024
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.
-
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.
Expenses $1,259,871
As filed on the 2024 return.
Listed in Part VII
-
Glenn O'Neill
Exe Dir/Pres
- Total calculated
- $161,106
- From this org
- $139,049
- From related orgs
- $0
- Other
- $22,057
- Hours/week
- 50
Schedule J breakdown matched by us
- Base
- $139,049
- Bonus
- not reported
- Other
- not reported
- Deferred
- $5,516
- Nontaxable benefits
- $16,541
- Filer's total
- $161,106
-
Cara O'Neill
Chief Science
- Total calculated
- $146,196
- From this org
- $124,759
- From related orgs
- $0
- Other
- $21,437
- Hours/week
- 40
-
Katie Walton
Vice President
- Total calculated
- $122,727
- From this org
- $118,051
- From related orgs
- $0
- Other
- $4,676
- Hours/week
- 40
-
Daniel Fraley
Board Chair
- Total calculated
- $0
- Hours/week
- 2
-
Jessica Haywood
Director
- Total calculated
- $0
- Hours/week
- 2
-
Faith McAngus
Director
- Total calculated
- $0
- Hours/week
- 2
-
Shelby Leonardi
Secretary
- Total calculated
- $0
- Hours/week
- 2
-
Mike Lykes
Director
- Total calculated
- $0
- Hours/week
- 2
-
Ben Von Wong
Director
- Total calculated
- $0
- Hours/week
- 2
-
Adam Shaywitz
Director
- Total calculated
- $0
- Hours/week
- 2
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
None.
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
-
$120,000
Treating Mucopolysaccharidosis
-
University of Georgia
$49,976
Peropheral Neural Stem Cell Models
-
$43,065
Blood-based biomarkers
-
Clemson University
$42,500
Neuroprotective peptides for treatm
Taxable family on this return
Schedule R Parts I, III and IV, as filed. These record ownership and control, not shared board members or money moved.
Disregarded entities
Part I: entities that legally are the filer and file no return of their own.
-
Swell Therapeutics LLC
Advance drug discovery and clinical translation · SC
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 7 November 2025
- IRS schema version
- 2024v5.2
- Source object
- 202503159349302755
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
The source document this was parsed from is served over the API, which is where bulk and document access live.