| (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) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | ||||||
| 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 | ||||||
| 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) .. | ||||||
| 6 | Public support. Subtract line 5 from line 4. | ||||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | ||||||
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | ||||||
| 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 | ||||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") | 1,004,262 | 982,259 | 634,787 | 1,331,631 | 677,322 | 4,630,261 |
| 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 | 1,004,262 | 982,259 | 634,787 | 1,331,631 | 677,322 | 4,630,261 |
| 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.) | 4,630,261 | |||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6 | 1,004,262 | 982,259 | 634,787 | 1,331,631 | 677,322 | 4,630,261 |
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources | 2,348 | 5,456 | 6,584 | 10,408 | 16,384 | 41,180 |
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975 | ||||||
| c | Add lines 10a and 10b | 2,348 | 5,456 | 6,584 | 10,408 | 16,384 | 41,180 |
| 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.).. | 1,006,610 | 987,715 | 641,371 | 1,342,039 | 693,706 | 4,671,441 |
| 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): |
|||||
| 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 | |
| 6Total annual distributions. Add lines 1 through 5. | 6 | |
|
7
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
7 | |
| 8 Distributable amount for 2025 from Section C, line 6 | 8 | |
| 9 Line 7 amount divided by Line 8 amount | 9 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2025 |
(iii) Distributable Amount for 2025 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2025 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2025 (reasonable cause required-- explain in Part VI).
See instructions. |
||||
| 3 Excess distributions carryover, if any, to 2025: | ||||
| a From 2020....... | ||||
| b From 2021....... | ||||
| c From 2022....... | ||||
| d From 2023....... | ||||
| e From 2024....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2025 distributable amount | ||||
|
i
Carryover from 2020 not applied (see instructions) |
||||
| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2025 from Section D, line 6: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2025 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2025, 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 2025. 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 2026. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2021..... | ||||
| b Excess from 2022..... | ||||
| c Excess from 2023..... | ||||
| d Excess from 2024..... | ||||
| e Excess from 2025..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
|---|
| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
|---|---|
| FORM 990 - ORGANIZATION'S MISSION | THE RP FOUNDATION'S MISSION IS TO: (A) INCREASE AWARENESS ABOUT RELAPSING POLYCHONDRITIS; (B) PROVIDE SUPPORT (PRIMARILY THROUGH THE USE OF THE INTERNET, SOCIAL MEDIA, AND PATIENT ADVOCACY PROGRAMS) FOR THOSE WHO ARE AFFECTED BY RELAPSING POLYCHONDRITIS, SUPPORT RESEARCH TO ADVANCE A CURE FOR RELAPSING POLYCHONDRITIS; (C) PROMOTE QUALITY CARE FOR RELAPSING POLYCHONDRITIS PATIENTS; AND (D) ENGAGE IN SUCH OTHER ACTIVITIES IN CONNECTION THEREWITH THAT THE BOARD OF DIRECTORS MAY AUTHORIZE, IN ALL CASES SUBJECT TO THE PROVISION OF SECTION 501(C)(3) OF THE INTERNAL REVENU CODE OF 1986, AS AMENDED, OR THE CORRESPONDING PROVISIONS OF ANY SUBSEQUENT FEDERAL TAX LAW (THE "CODE"). |
| FORM 990, PAGE 2, PART III, LINE 4A | AWARENESS: THE RP FOUNDATION PARTNERED WITH MCLAREN TROPHY AMERICA DURING THE 2025- 2026 RACING SEASON TO SIGNIFICANTLY EXPAND AWARENESS AND SUPPORT FOR RP RESEARCH. RACE FOR RP BRANDING APPEARED ON EVERY MCLAREN TROPHY AMERICA RACE CAR THROUGHOUT THE SEASON, WHILE ON-SITE ACTIVATIONS AND PADDOCK ENGAGEMENT OPPORTUNITIES CONNECTED THOUSANDS OF FANS WITH THE FOUNDATION'S MISSION. THE PARTNERSHIP ALSO INTRODUCED THE "WIN A HOT LAP" FUNDRAISING CAMPAIGN, WHICH ENCOURAGED FAN PARTICIPATION THROUGH DONATIONS AND HELPED ATTRACT NEW SUPPORTERS. THE COLLABORATION GENERATED BOTH FUNDRAISING SUCCESS AND INCREASED VISIBILITY THROUGH CHARITY AUCTIONS HELD AT THE INDIANAPOLIS MOTOR SPEEDWAY AND THE MCLAREN TECHNOLOGY CENTRE IN WOKING, UNITED KINGDOM. TOGETHER, THESE EFFORTS BROADENED AWARENESS OF RP AND AUTOIMMUNE DISEASE RESEARCH, ENGAGED NEW AUDIENCES WITHIN THE MOTORSPORTS COMMUNITY, AND CONTRIBUTED TO ONE OF THE MOST IMPACTFUL YEARS IN RACE FOR RP'S HISTORY. THE PARTNERSHIP HAS CONTINUED INTO THE 2026 SEASON, WITH NEW AWARENESS INITIATIVES LAUNCHING AT SONOMA RACEWAY. THE 2025 WARRIOR WALK WAS A RECORD-BREAKING AWARENESS AND FUNDRAISING CAMPAIGN, RAISING MORE THAN 25,000 IN JUST TWO WEEKS AND ATTRACTING THE HIGHEST NUMBER OF FIRST-TIME DONORS IN THE PROGRAM'S HISTORY. PARTICIPANTS ACROSS THE COUNTRY WALKED, RAN, AND ENGAGED THEIR COMMUNITIES TO INCREASE AWARENESS OF RELAPSING POLYCHONDRITIS (RP) AND SUPPORT CRITICAL RESEARCH EFFORTS. A HIGHLIGHT OF THE CAMPAIGN TOOK PLACE AT THE INDIANAPOLIS MOTOR SPEEDWAY, WHERE DRIVERS, CREW MEMBERS, AND FANS ATTENDING A MCLAREN TROPHY AMERICA EVENT JOINED TOGETHER TO WALK A LAP AROUND THE ICONIC TRACK. THIS UNIQUE EVENT INTRODUCED RP AWARENESS TO A NEW AUDIENCE AND DEMONSTRATED THE GROWING REACH AND ENGAGEMENT OF THE FOUNDATION'S AWARENESS INITIATIVES. |
| FORM 990, PAGE 2, PART III, LINE 4B | RESEARCH: THE RP FOUNDATION'S INVESTMENTS IN RP AND RELATED AUTOIMMUNE DISEASE RESEARCH ACCELERATED SIGNIFICANT PROGRESS IN FY26, ADVANCING UNDERSTANDING OF DISEASE BIOLOGY, CLINICAL OUTCOMES, AND TREATMENT WHILE EXPANDING ACCESS TO SPECIALIZED CARE. THROUGH FOUNDATION SUPPORT, THE PENN RP PROGRAM, NOW AMONG THE LARGEST CENTERS IN THE WORLD DEDICATED TO RP RESEARCH AND CARE, SERVED MORE THAN 150 PATIENTS AND ENROLLED NEARLY ALL ELIGIBLE PATIENTS INTO THE VASCULITIS CLINICAL RESEARCH CONSORTIUM (VCRC) LONGITUDINAL STUDY, CREATING AN UNPARALLELED CLINICAL AND BIOSPECIMEN REPOSITORY FOR ONGOING SCIENTIFIC DISCOVERY. A MAJOR MILESTONE WAS THE LAUNCH OF PROSPECT-RP, THE FIRST-EVER CLINICAL TRIAL FOR RELAPSING POLYCHONDRITIS. THE STUDY EVALUATES TWO PROMISING IMMUNOMODULATORY THERAPIES IDENTIFIED THROUGH LONGITUDINAL COHORT RESEARCH AND IS GENERATING CRITICAL DATA ON TREATMENT EFFECTIVENESS WHILE HELPING ESTABLISH CLINICAL TRIAL METHODOLOGIES FOR FUTURE RP STUDIES. RESEARCHERS ARE ALSO COMPARING MULTIPLE DISEASE ACTIVITY MEASUREMENT TOOLS, INCLUDING THE RP DISEASE ACTIVITY INDEX (RPDAI), TO DETERMINE THE MOST EFFECTIVE WAY TO ASSESS DISEASE ACTIVITY IN FUTURE THERAPEUTIC TRIALS. THE PROGRAM FURTHER EXPANDED THE RADAR IMMUNE-PROFILING STUDY TO MORE THAN 400 PATIENT SAMPLES COLLECTED ACROSS MULTIPLE TIME POINTS, CREATING A UNIQUE RESOURCE FOR IDENTIFYING DISEASE BIOMARKERS AND THERAPEUTIC TARGETS THAT MAY ULTIMATELY SUPPORT PRECISION MEDICINE APPROACHES FOR RP. THE FOUNDATION ALSO HELPED STRENGTHEN NATIONAL AND INTERNATIONAL RESEARCH COLLABORATIONS, INCLUDING ONGOING PARTNERSHIP WITH THE NATIONAL INSTITUTES OF HEALTH AND NEW COLLABORATIONS WITH LEADING RHEUMATOLOGY RESEARCHERS IN BEIJING, CHINA, TO EXPAND PARTICIPATION IN BOTH THE LONGITUDINAL STUDY AND PROSPECT-RP. IN ADDITION, SUPPORT FOR EMERGING INVESTIGATORS HELPED BUILD FUTURE RP RESEARCH CAPACITY. SCIENTIFIC FINDINGS FROM FOUNDATION-SUPPORTED RESEARCH CONTINUED TO GAIN INTERNATIONAL RECOGNITION, INCLUDING STUDIES PRESENTED AT A MAJOR INTERNATIONAL VASCULITIS CONFERENCE EXAMINING OCULAR INVOLVEMENT AS A PREDICTOR OF DISEASE PROGRESSION AND EVALUATING THE PERFORMANCE OF THE RP DISEASE ACTIVITY INDEX IN MEASURING PATIENT DISEASE ACTIVITY. THE YEAR ALSO MARKED THE SUCCESSFUL LAUNCH OF THE FIRST PENN RP CENTER PATIENT EDUCATION MEETING, WHICH BROUGHT TOGETHER MORE THAN 150 PATIENTS, CAREGIVERS, AND CLINICIANS TO ADVANCE EDUCATION, ENGAGEMENT, AND COMMUNITY BUILDING. THE PURPOSE BIOBANK AND DATA REPOSITORY AT THE ALLEGHENY HEALTH NETWORK AUTOIMMUNITY INSTITUTE CONTINUED TO GROW IN AY26, ENROLLING A TOTAL OF 120 PARTICIPANTS FROM 24 STATES AND PUERTO RICO, INCLUDING 73 PATIENTS WITH RP. SINCE IT LAUNCHED IN 2024, THE AHN PURPOSE BIOBANK HAS BANKED 99 BLOOD SPECIMENS, WHICH ARE BEING STORED FOR FUTURE RP AND RELATED AUTOIMMUNE DISEASE RESEARCH. |
| FORM 990, PAGE 2, PART III, LINE 4D | FUNDRAISING IN FY26, THE RELAPSING POLYCHONDRITIS (RP) FOUNDATION, A GUIDESTAR PLATINUM SEAL OF TRANSPARENCY NONPROFIT ORGANIZATION, FURTHERED ITS COMMITMENT TO ADVANCING RP AND RELATED AUTOIMMUNE DISEASE RESEARCH THROUGH A SERIES OF INNOVATIVE FUNDRAISING INITIATIVES. FUNDS RAISED THROUGH THESE EFFORTS DIRECTLY SUPPORT RESEARCH PROGRAMS THAT ARE EXPANDING SCIENTIFIC UNDERSTANDING OF RP, ACCELERATING THERAPEUTIC DEVELOPMENT, AND IMPROVING OUTCOMES FOR PATIENTS. HIGHLIGHTS OF FY26 FUNDRAISING ACTIVITIES INCLUDE: "GIVING TUESDAY AND YEAR-END GIVING CAMPAIGNS: ANNUAL FUNDRAISING APPEALS THAT HELPED GROW ENGAGEMENT, CONNECT SUPPORTERS, AND GENERATE CRITICAL FUNDING FOR RP RESEARCH. "RP WARRIOR 5K WALK: A GLOBAL, PATIENT-CENTERED AWARENESS AND FUNDRAISING EVENT THAT MOBILIZED INDIVIDUALS AND FAMILIES TO SUPPORT VITAL RP RESEARCH AND ADVOCACY EFFORTS. "CARB NIGHT HAPPY HOUR WITH JAMES HINCHCLIFFE AND FRIENDS: HELD IN CONJUNCTION WITH INDIANAPOLIS RACE FESTIVITIES, THIS UNIQUE EVENT BROUGHT TOGETHER MOTORSPORTS DRIVERS, SUPPORTERS, AND COMMUNITY MEMBERS FOR AN EVENING FEATURING EXCLUSIVE AUCTION ITEMS AND SELECTIONS FROM ROOT & BONE'S AWARD-WINNING MENU. PROCEEDS BENEFITED BOTH THE RP FOUNDATION AND THE STOP & GO FOUNDATION. "RACE FOR RP "HOT LAP" FUNDRAISING CAMPAIGN: OFFERED AT EACH MCLAREN TROPHY AMERICA EVENT, THIS INITIATIVE INVITED FANS TO DONATE FOR A CHANCE TO WIN AN UNFORGETTABLE HOT-LAP EXPERIENCE IN MCLAREN RACE CARS, EXPANDING AWARENESS WHILE ENGAGING NEW SUPPORTERS. "END-OF-SEASON RACING FUNDRAISERS: SPECIAL FUNDRAISING EVENTS HELD AT THE MCLAREN TROPHY AMERICA SEASON FINALE AND AT MCLAREN'S HEADQUARTERS IN WOKING, UNITED KINGDOM, RAISED FUNDS FOR RP RESEARCH AND INCREASED INTERNATIONAL AWARENESS OF THE DISEASE. "PRAGUE FOR PROGRESS: RUNNING FOR JANE AND RELAPSING POLYCHONDRITIS RESEARCH: ORGANIZED BY A SON WHOSE MOTHER PASSED AWAY FROM RP, THIS GRASSROOTS FUNDRAISING EFFORT BROUGHT TOGETHER NINE RUNNERS WHO PARTICIPATED IN THE RUNCZECH PRAGUE MARATHON TO RAISE FUNDS FOR THE RP FOUNDATION AND THE WREN PROJECT, HELPING ADVANCE RP RESEARCH AND AWARENESS. "MEDAWAR FINE JEWELERS' "SIP, SHOP & SUPPORT" EVENT: THIS FUNDRAISING EVENT FEATURED GOURMET APPETIZERS AND FINE JEWELRY, WITH A PORTION OF PROCEEDS BENEFITING THE RP FOUNDATION'S EFFORTS TO ADVANCE RESEARCH AND INCREASE AWARENESS OF RP. |
| FORM 990, PAGE 6, PART VI, LINE 11B | THE FORM 990 IS PROVIDED TO THE BOARD WHICH IS REVIEWED AND DISCUSSED AT A MEETING. |
| FORM 990, PAGE 6, PART VI, LINE 12C | POLICY IS EMAILED, SIGNED BY MEMBERS AND RETAINED BY TREASURER. THIS IS DONE ANNUALLY. |
| FORM 990, PAGE 6, PART VI, LINE 15A | AN INFORMAL MARKET SURVEY REGARDING PAY RATES AND RESPONSIBILITIES FOR EQUIVALENT DIRECTOR POSITIONS IN SIMILAR NON-PROFIT ORGANIZATIONS WAS PERFORMED. THE RESPONSIBILITIES/ACCOMPLISHMENTS OF THE CURRENT CONTRACTUAL DIRECTOR/PRESIDENT WAS REVIEWED. COMPENSATION WAS BASED ON THE BOARD DISCUSSION AND MARKET SURVEY. |
| FORM 990, PAGE 6, PART VI, LINE 15B | SEE RESPONSE TO 15A. THERE ARE NO OTHER EMPLOYEES. |
| FORM 990, PAGE 6, PART VI, LINE 18 | ALSO AVAILABLE ON WWW.GUIDESTAR.ORG |
| FORM 990, PAGE 6, PART VI, LINE 19 | GOVERNING DOCUMENTS ARE AVAILABLE ON REQUEST. |
| Software ID: | |
| Software Version: |