Together Strong NPC Foundation
EIN 821913775About
As explained below, the Foundation has no plans for dissolution. This statement is submitted to report the distribution of certain assets during the year. The distributions resulted in a substantial contraction of assets. The following information is submitted in accordance with Treasury Regulation Section 1.6043-3(a)(1) and the Form 990-PF instructions: During the taxable year ending December 31, 2021, the Foundation made distributions from assets from sources other than current income. Collectively, the distributions in excess of current income totaled $797,950. This amount represents 25% or more of the Foundation's net assets of $1,520,326 (as measured by fair market value) at the beginning of the Foundation's taxable year ending December 31, 2021. Although the Foundation technically experienced a substantial contraction, it will continue in existence and has no plans for dissolution. The Foundation made distributions of cash to the grantees listed in the attachment to Part XIV, Line 3a; each such grant was made solely for the charitable purpose specified therein.
Focus Areas
Application Information
Financial Trends
Giving Over Time
Total Assets Over Time
View financial data as table
| Year | Total Giving | Total Assets | Revenue | Grants |
|---|---|---|---|---|
| 2018 | $50K | $3.2M | $1.7M | 1 |
| 2020 | $840K | $1.5M | $14K | 6 |
| 2021 | $798K | $649K | $24K | 5 |
| 2022 | $638K | $0 | $4K | 5 |
Grant Size Distribution
Based on 17 grants on record
Geographic Distribution
Officers & Directors
Grants Awarded (17 total)
| Purpose | ||||
|---|---|---|---|---|
| The Board of Trustees of the University of Illinoi | Urbana, IL | $321,750 | Biochemical Markers of NPC and Clinical Correlates FUND | 2020 |
| The Board of Trustees of the University of Illinoi | Urbana, IL | $321,750 | BIOCHEMICAL MARKERS OF NPC AND CLINICAL CORRELATES FUND | 2021 |
| The Board of Trustees of the University of Illinoi | Urbana, IL | $321,750 | Biochemical Markers of NPC and Clinical Correlates fund | 2022 |
| Andrews Firefly Fund | Austin, TX | $266,667 | Firefly's NPC Newborn Screening Initiative FUND | 2020 |
| Andrews Firefly Fund | Austin, TX | $266,667 | FIREFLY'S NPC NEWBORN SCREENING INITIATIVE FUND | 2021 |
| Eunice Kennedy Shriver National Institute of Child | Bethesda, MD | $182,500 | Genomic and Phenotypic database for Niemann-Pick Disease, type C | 2022 |
| Eunice Kennedy Shriver National Institute of Child | Bethesda, MD | $91,250 | Genomic and Phenotypic database for Niemann-Pick Disease, type C FUND | 2020 |
| Eunice Kennedy Shriver National Institute of Child | Bethesda, MD | $91,250 | GENOMIC AND PHENOTYPIC DATABASE FOR NIEMANN- PICK DISEASE, TYPE C FUND | 2021 |
| Eunice Kennedy Shriver National Institute of Child | Bethesda, MD | $75,000 | research project in Biochemical Markers in NPC | 2020 |
| Eunice Kennedy Shriver National Institute of Child | Bethesda, MD | $75,000 | RESEARCH PROJECT IN BIOCHEMICAL MARKERS IN NPC | 2021 |
| Eunice Kennedy Shriver National Institute of Child | Bethesda, MD | $75,000 | General & Unrestricted | 2022 |
| University of Notre Dame | Notre Dame, IN | $50,000 | Externally-led Patient-Focused Drug Development meeting in Niemann-Pick Disease Type C | 2018 |
| Roma Tre University | Rome, None | $43,283 | General & Unrestricted | 2020 |
| Roma Tre University | Rome, None | $43,283 | General & Unrestricted | 2021 |
| Roma Tre University | $43,283 | General & Unrestricted | 2022 | |
| Agencia Estatal Consejo Superior De Investigacione | Barcelona, None | $42,000 | General & Unrestricted | 2020 |
| Ara Parseghian Medical Research Foundation | Tucson, AZ | $15,644 | General & Unrestricted | 2022 |