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)
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(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 10,698,823 | 12,978,641 | 17,810,315 | 23,061,454 | 23,557,036 | 88,106,269 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 10,698,823 | 12,978,641 | 17,810,315 | 23,061,454 | 23,557,036 | 88,106,269 |
| 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) .. | 8,653,378 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 79,452,891 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 10,698,823 | 12,978,641 | 17,810,315 | 23,061,454 | 23,557,036 | 88,106,269 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 215,046 | 156,753 | 5,817 | 6,633 | 403,834 | 788,083 |
| 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.).. | ||||||
| 11 | Total support. Add lines 7 through 10 | 88,894,352 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (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) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (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 2022 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-2022 |
(iii) Distributable Amount for 2022 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2022 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2022 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2022: | ||||
| a From 2017....... | ||||
| b From 2018....... | ||||
| c From 2019....... | ||||
| d From 2020....... | ||||
| e From 2021....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2022 distributable amount | ||||
|
i
Carryover from 2017 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2022 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2022 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2022, 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 2022. 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 2023. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2018..... | ||||
| b Excess from 2019..... | ||||
| c Excess from 2020..... | ||||
| d Excess from 2021..... | ||||
| e Excess from 2022..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| FORM 990, PART III, LINE 4A, DESCRIPTION OF PROGRAM SERVICES | RDCA-DAP IS AN FDA-FUNDED INITIATIVE THAT WILL PROVIDE A CENTRALIZED AND STANDARDIZED INFRASTRUCTURE TO SUPPORT AND ACCELERATE RARE DISEASE CHARACTERIZATION WITH THE GOAL OF ACCELERATING THERAPY DEVELOPMENT. 2023 PROVED TO BE A BANNER YEAR FOR THE PLATFORM. THE PAST YEAR SAW 15 DISEASE DATA SETS ADDED TO THE PLATFORM TO MAKE IT 73 RARE DISEASE DATA SETS OVERALL, REPRESENTING OVER 34 DISEASE STATES (15 DISEASES ADDED IN 2023). THERE ARE NOW 445 PLATFORM USERS AND 26 ACTIVE WORKSPACES. ACTIVE AGREEMENTS NOW INCLUDE 35 DATA CONTRIBUTION AGREEMENTS, EIGHT NORD DATA CONTRIBUTION COVERSHEETS AND FOUR TASK FORCE AGREEMENTS. THERE WERE CONTINUED ADVANCEMENTS IN DATA AGGREGATION AND DISEASE MODELING IN THE DISEASE AREAS OF FRIEDREICH'S ATAXIA (FA) AND PROGRESSIVE SUPRANUCLEAR PALSY, AS WELL AS THE ESTABLISHMENT OF A CLINICAL TRIAL SIMULATOR TO INFORM TRIAL DESIGN IN FA. THIS YEAR ALSO MARKED THE RELEASE OF CRITICAL PATH ONTOLOGY (CPONT) APPLICATION, WHICH FACILITATES MAPPING AND LINKING BETWEEN DIFFERENT STANDARDIZED DATA VOCABULARIES. THERE WAS ALSO A SIGNIFICANT PAPER PUBLICATION, "THE FUTURE OF RARE DISEASE DRUG DEVELOPMENT: THE RARE DISEASE CURES ACCELERATOR DATA ANALYTICS PLATFORM (RDCA-DAP)" IN THE JOURNAL OF PHARMACOKINETICS AND PHARMACODYNAMICS. ANOTHER SIGNIFICANT PUBLICATION WAS THAT OF EDUCATION MODULES 1-3. "RARE DISEASE DRUG DEVELOPMENT: WHAT PATIENTS AND ADVOCATES NEED TO KNOW." RDCA-DAP MADE SIGNIFICANT CONTRIBUTIONS TO THE COMMUNITY IN PERSON; THE 2023 RARE AND ORPHAN DISEASE CONFERENCE HAD 282 REGISTRANTS AND 202 ATTENDEES, INCLUDING 53 EXTERNAL SPEAKERS AND PANELISTS ACROSS ACADEMIA, GOVERNMENT/REGULATORY, INDUSTRY, NONPROFITS, AND PATIENTS/CAREGIVERS. LASTLY, THE PROGRAM MADE A SIGNIFICANT IMPACT ON PROFESSIONAL DEVELOPMENT WITH FOUR WEBINARS HELD AS PART OF ITS PROFESSIONAL DEVELOPMENT SERIES, WITH 760 REGISTRANTS AND 441 ATTENDEES. |
| FORM 990, PART III, LINE 4B, DESCRIPTION OF PROGRAM SERVICES | CURE DRUG REPURPOSING COLLABORATORY (CDRC) WAS FOUNDED IN 2020 AND IS DESIGNED TO CAPTURE REAL-WORLD CLINICAL OUTCOME DATA TO ADVANCE DRUG REPURPOSING AND INFORM FUTURE CLINICAL TRIALS FOR DISEASES OF HIGH UNMET MEDICAL NEED. THE PAST YEAR REPRESENTED SOME INCREDIBLE PROGRESS FROM THE COLLABORATORY. CDRC ASSISTED IN THE DEVELOPMENT, CONSENSUS, FINALIZATION, AND DEPLOYMENT OF A SARCOMA CLINICAL CASE REPORT FORM FOR THE CURE ID APP WITH INPUT FROM MULTIPLE STAKEHOLDERS, AND ALSO INITIATED A CONTRACT WITH PROGRAM PARTNER XCURES TO EXTRACT DATA FROM SARCOMA PATIENT EHRS FOR PECOMA CASES. STUDENTS FROM CLEMSON UNIVERSITY SCHOOL OF MEDICINE AND INTERNS FROM CDRC ALSO HAD THE OPPORTUNITY TO EXTRACT PECOMA CASES FROM THE LITERATURE TO CURE ID, WHILE THE PROGRAM ESTABLISHED AND LED MONTHLY SARCOMA WORKGROUP CALLS FOR PATIENTS, CLINICIANS, AND FDA OCE (ONCOLOGY CENTERS OF EXCELLENCE) TO DEVELOP A SARCOMA PILOT WITHIN CURE ID. CDRC PARTNERED WITH HEHEALTH TO REVIEW AND EDIT THE MPOX CRF ON CURE ID APP TO PROMOTE OUTREACH TO PATIENTS. THE TEAM CREATED AN INTERNATIONAL STI SURVEILLANCE GROUP UNDER THE AUSPICES OF WHO, WITH EXISTING SURVEILLANCE EFFORTS IN THE U.S., CANADA, AND THE UK TO PARTNER ON A PROJECT TO IDENTIFY REPURPOSED DRUGS FOR NEISSERIA GONORRHEA WITH ADDITIONAL COUNTRIES AS OBSERVERS. THIS GROUP HELPED CREATE THE CRF FOR NEISSERIA GONORRHEA AND ORGANIZED A MONTHLY LONG COVID CLINICAL THINK TANK CALL SERIES CONSISTING OF 27 CLINICAL TRIALISTS REGULATORS, ACADEMICIANS AND FOUNDATIONS ACROSS THE U.S., CANADA, AND EUROPE TO REVIEW AND DISCUSS CHALLENGES IN SETTING UP AND DESIGNING CLINICAL TRIALS FOR THIS DISEASE. |
| FORM 990, PART III, LINE 4C, DESCRIPTION OF PROGRAM SERVICES | CP-RND WAS FOUNDED IN SEPTEMBER 2022 TO LEAD COLLABORATIONS THAT ADVANCE TREATMENTS TO IMPROVE THE LIVES OF THOSE AFFECTED BY RARE NEURODEGENERATIVE DISEASES, INCLUDING ALS. CP-RND HAD MAJOR HIGHLIGHTS IN ITS FIRST FULL YEAR AS A C-PATH CONSORTIUM. IN REGARD TO ITS PATIENT-FOCUSED DRUG DEVELOPMENT PROCESS, THE GROUP WAS ACTIVE IN ITS ENGAGEMENT WITH PEOPLE LIVING WITH DISEASES, ITS COORDINATION WITH ACCELERATING MEDICINE PARTNERSHIP (AMP) EFFORTS, AND IN THE FORMATION OF A PEOPLE WITH LIVED EXPERIENCES (PWLE) GROUP TO GIVE AND RECEIVE FEEDBACK ON ALS-RELATED PROJECTS. FROM A DATA PERSPECTIVE, CP-RND REVIEWED OVER 70 LARGE DATABASES, WITH A PRIORITY LISTING CREATED AND SHARED WITH AMP ALS. THE GROUP ALSO SUMMARIZED RESULTS OF AROUND 700 STUDIES FROM CLINICALTRIALS.GOV SEARCHES. PROGRESS FOR DATA DICTIONARY COLLECTION AND DATA SHARE AGREEMENTS REMAIN ONGOING. FINALLY, CP-RND'S SCIENTIFIC CONTRIBUTIONS ARE REFLECTED BY ITS EFFORTS TO REVIEW AND COLLABORATE WITH KEY OPINION LEADERS REGARDING NFL/TDP43 AND OTHER POTENTIAL BIOMARKERS FOR USE IN ALS CLINICAL TRIALS. |
| FORM 990, PART VI, SECTION A, LINE 2 | JEFF JACOB AND SHAUN KIRKPATRICK HAVE A BUSINESS RELATIONSHIP. |
| FORM 990, PART VI, SECTION B, LINE 11B | FORM 990 IS PREPARED BY AN EXTERNAL CPA FIRM USING INFORMATION PROVIDED BY THE ORGANIZATION. THE FORM IS REVIEWED BY THE ORGANIZATION'S CFO, PRESIDENT/COO, CEO, THE BOARD AUDIT, FINANCE, AND RISK COMMITTEE, AND THE BOARD OF DIRECTORS PRIOR TO BEING FINALIZED. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL MEMBERS OF THE BOARD OF DIRECTORS AND ALL OFFICERS OF THE ORGANIZATION ARE REQUIRED TO FILL OUT A CONFLICT OF INTEREST FORM ANNUALLY. THE RESULTS ARE COMPILED AND REVIEWED BY THE BOARD'S AUDIT, FINANCE, AND RISK COMMITTEE. ANY ACTUAL OR PERCEIVED CONFLICTS THAT HAVE THE POTENTIAL TO BIAS ANY DISCUSSIONS OR DECISIONS BY THE BOARD ARE DISCUSSED BY THE BOARD. ANY DIRECTOR WITH A REAL OR POTENTIAL CONFLICT WILL RECUSE THEMSELVES FROM ANY DISCUSSION OR DECISION WHERE THE CONFLICT HAS A BEARING. |
| FORM 990, PART VI, SECTION B, LINE 15 | A BOARD OF DIRECTORS COMPENSATION COMMITTEE MEETS AND REVIEWS EXECUTIVE COMPENSATION ANNUALLY. PERIODICALLY, THE COMMITTEE REQUESTS A COMPENSATION ANALYSIS TO DETERMINE IF EMPLOYEE COMPENSATION HAS REMAINED WITHIN MARKET RANGE OR IF ADJUSTMENTS ARE REQUIRED. THIS INFORMATION IS THEN USED AS A BASIS FOR THE COMPENSATION COMMITTEE'S RECOMMENDATION TO THE BOARD OF DIRECTORS. AN OVERALL SALARY PROGRAM FOR EMPLOYEES MUST BE APPROVED BY THE BOARD OF DIRECTORS COMPENSATION COMMITTEE BEFORE IMPLEMENTATION. ALL EMPLOYEE SALARY INCREASES MUST BE APPROVED BY THE PRESIDENT/COO. |
| FORM 990, PART VI, SECTION C, LINE 19 | ARTICLES OF INCORPORATION CAN BE FOUND ON THE ARIZONA CORPORATION COMMISSION WEBSITE. THE CONFLICT OF INTEREST POLICY AND THE FINANCIAL STATEMENTS (VIA THE ANNUAL REPORT) ARE POSTED ON THE INSTITUTE'S WEBSITE. |
| FORM 990, PART XI, LINE 9: | BOOK/TAX DIFFERENCE - OPERATING LEASE -17,574. |
| Software ID: | |
| Software Version: |