Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
|
Total |
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Calendar year
(or fiscal year beginning in)
![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 1,862,485 | 2,135,123 | 2,268,151 | 1,849,786 | 2,273,329 | 10,388,874 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf .... | 0 | |||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | 0 | |||||
| 4 | Total. Add lines 1 through 3 | 1,862,485 | 2,135,123 | 2,268,151 | 1,849,786 | 2,273,329 | 10,388,874 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 0 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 10,388,874 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 1,862,485 | 2,135,123 | 2,268,151 | 1,849,786 | 2,273,329 | 10,388,874 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 233,157 | 186,864 | 483,599 | 292,943 | 580,274 | 1,776,837 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | 7,985 | 1,436 | 1,781 | 2,116 | 14,687 | 28,005 |
| 11 | Total support. Add lines 7 through 10 | 12,193,716 | |||||
Calendar year (or fiscal
year beginning in) ![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2024 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2024 |
(iii) Distributable Amount for 2024 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2024 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2024 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2024: | ||||
| a From 2019....... | ||||
| b From 2020....... | ||||
| c From 2021....... | ||||
| d From 2022....... | ||||
| e From 2023....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2024 distributable amount | ||||
|
i
Carryover from 2019 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2024 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2024 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2024, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2024. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
7 Excess distributions carryover to 2025. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2020..... | ||||
| b Excess from 2021..... | ||||
| c Excess from 2022..... | ||||
| d Excess from 2023..... | ||||
| e Excess from 2024..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
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| Software ID: | 24020490 |
| Software Version: | 2024v5.2 |
| Return Reference | Explanation |
|---|---|
| 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. |
| 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. |
| Software ID: | 24020490 |
| Software Version: | 2024v5.2 |