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 | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
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(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (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) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (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) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | 847,506 | 2,118,700 | 1,004,262 | 982,259 | 634,787 | 5,587,514 |
| 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 | 847,506 | 2,118,700 | 1,004,262 | 982,259 | 634,787 | 5,587,514 |
| 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.) | 5,587,514 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | 847,506 | 2,118,700 | 1,004,262 | 982,259 | 634,787 | 5,587,514 |
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | 8 | 1,157 | 2,348 | 5,456 | 6,584 | 15,553 |
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | 8 | 1,157 | 2,348 | 5,456 | 6,584 | 15,553 |
| 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.).. | 847,514 | 2,119,857 | 1,006,610 | 987,715 | 641,371 | 5,603,067 |
| 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 2023 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-2023 |
(iii) Distributable Amount for 2023 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2023 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2023 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2023: | ||||
| a From 2018....... | ||||
| b From 2019....... | ||||
| c From 2020....... | ||||
| d From 2021....... | ||||
| e From 2022....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2023 distributable amount | ||||
|
i
Carryover from 2018 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2023 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2023 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2023, 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 2023. 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 2024. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2019..... | ||||
| b Excess from 2020..... | ||||
| c Excess from 2021..... | ||||
| d Excess from 2022..... | ||||
| e Excess from 2023..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
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| 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 RELAPSING POLYCHONDRITIS FOUNDATION (RP FOUNDATION) PARTNERED WITH RACE FOR RP AND SIX INTERNATIONALLY RECOGNIZED MOTORSPORTS TEAMS TO GENERATE BRAND AWARENESS AND PROMOTE OUR PURPOSE TO THE BROADER COMMUNITY. IN 2023, THE RP FOUNDATION CREATED THE RACE OF OUR LIVES DOCUMENTARY AS A SEQUEL TO THE RIDE OF MY LIFE DOCUMENTARY THAT WAS RELEASED IN 2018. THE RACE OF OUR LIVES DOCUMENTARY CONTINUES TO INCREASE AWARENESS REGARDING RP AND HIGHLIGHTS THE DISCOVERIES AND ADVANCEMENTS THAT OUR TALENTED RESEARCH PARTNERS ARE GENERATING. THE RACE OF OUR LIVES DOCUMENTARY FEATURES A NEW MUSICAL COMPOSITION, "I WILL FIGHT," WRITTEN AND PRODUCED BY SINGER, DENISE STEFANIE. THE NEW DOCUMENTARY WON NUMEROUS AWARDS AT LOCAL FILM FESTIVALS AND WAS FEATURED IN THE APRIL / MAY EDITION OF SOUTHBAY MAGAZINE. THE RP FOUNDATION CONTINUED TO INCREASE AWARENESS AND SUPPORT FOR THE INNOVATIVE RP AND AUTOIMMUNE RESEARCH THAT WE'RE INVESTING IN VIA OUR YOUTUBE CHANNEL, ENEWSLETTER AND SOCIAL MEDIA CHANNELS (X, FACEBOOK AND INSTAGRAM). |
| FORM 990, PAGE 2, PART III, LINE 4B | RESEARCH: WHILE RP CONTINUED TO BE A SIGNIFICANT SCIENTIFIC AND MEDICAL CHALLENGE, THE TALENTED RESEARCH PARTNERS THAT THE RP FOUNDATION INVESTED IN CONTINUED TO DRIVE RP AND RELATED AUTOIMMUNE DISEASES TO THE FOREFRONT OF GROUND- BREAKING DISCOVERIES. THE FOUNDATION CONTINUED TO SUPPORT RESEARCH CONDUCTED AT THE UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER AND NYU GROSSMAN SCHOOL OF MEDICINE THAT IS SEARCHING FOR GENETIC MARKERS IN PATIENTS WITH RP-RELATED AUTOIMMUNE DISEASE AND BONE MARROW DISEASES. IN FY2024, THIS RESEARCH INITIATIVE ESTABLISHED A COMPREHENSIVE DATABASE OF SUBJECTS WITH BLOOD CANCERS AND AUTOIMMUNE DISEASES, INCLUDING RP. IT ALSO DEVELOPED A SCREENING PROCEDURE FOR UBA1 MUTATIONS IN PATIENTS WHO POTENTIALLY HAVE AUTOIMMUNE DISEASE. THE GOAL OF THIS RESEARCH IS TO POTENTIALLY FACILITATE THE EARLY DIAGNOSIS AND MANAGEMENT OF PATIENTS WHO HAVE THIS MUTATION. THE FOUNDATION INVESTED IN THE NEXT PHASE OF VEXAS RESEARCH BEING CONDUCTED IN THE INFLAMMATORY DISEASE GENETICS PROGRAM AT NYU LANGONE AND THE RELAPSING POLYCHONDRITIS AND AUTOINFLAMMATORY CLINICS AT THE NATIONAL INSTITUTES OF HEALTH (NIH). RESEARCHERS ADVANCED SCIENTIFIC KNOWLEDGE REGARDING THE GENETIC CHANGES ASSOCIATED WITH INFLAMMATION IN PATIENTS WITH VEXAS SYNDROME AND ESTABLISHED AN NYU VEXAS PATIENT CLINIC WITH A RHEUMATOLOGIST, WITH PLANS TO DEVELOP CLINICAL TRIALS FOR VEXAS SYNDROME AND RELATED AUTOIMMUNE DISEASES. THE RP FOUNDATION SUPPORTED PURPOSE BIOBANK AT ALLEGHENY HEALTH NETWORK WHICH LAUNCHED IN 2024 TO CREATE A CENTRALIZED, STATE-OF-THE-ART COLLECTION OF CLINICAL AND RESEARCH DATA SO RESEARCHERS CAN ADVANCE OUR COLLECTIVE UNDERSTANDING OF RELAPSING POLYCHONDRITIS AND RELATED AUTOIMMUNE DISEASES. IN FY 24, THE PENN MEDICINE RELAPSING POLYCHONDRITIS PROGRAM THAT THE RP FOUNDATION PROVIDED SEED FUNDING TO LAUNCH IS BECOMING A VALUABLE RESOURCE AND CLINICAL DESTINATION FOR PATIENTS WITH RP, WITH OVER 200 PATIENT VISITS EACH YEAR. THE PENN MEDICINE RELAPSING POLYCHONDRITIS PROGRAM GREW ITS CLINICAL ARM AS PART OF THE PENN VASCULITIS CENTER AND EXPANDED THE RESEARCH PROGRAM THROUGH THE VASCULITIS CLINICAL RESEARCH CONSORTIUM (VCRC) LONGITUDINAL STUDY OF RELAPSING POLYCHONDRITIS (RP). RESEARCHERS ANALYZED DATA FROM NEARLY 200 PATIENTS IN THE VCRC LONGITUDINAL STUDY OF RP FOCUSING ON THE CLINICAL PRESENTATIONS OF PATIENTS WITH RP AND THE MEDICATIONS USED TO TREAT THEM AND ARE GENERATING A MANUSCRIPT SUMMARIZING HER FINDINGS. ACCORDING TO PENN MEDICINE, THIS WILL BE THE LARGEST AND MOST EXTENSIVE REPORT EVER COMPILED ON RP. THE RP FOUNDATION ALSO SUPPORTED THE "FRIENDS OF PATIENTS AT NIH RP FUND" WHICH IS ADMINISTERED BY THE NIH AND PROVIDES FUNDING FOR TRAVEL AND LODGING TO ELIGIBLE PATIENTS TRAVELING TO THE NIH FOR TREATMENT. |
| FORM 990, PAGE 2, PART III, LINE 4D | FUNDRAISING FUNDRAISING FUELS AND DRIVES OUR RESEARCH INITIATIVES AND IS PROUD OF GUIDESTAR'S PLATINUM SEAL OF TRANSPARENCY DESIGNATION. IN FY24, THE FOUNDATION ENGAGED IN THE FOLLOWING ANNUAL, PATIENT-LED, MOTORSPORTS- TARGETED AND SALON FUNDRAISING INITIATIVES: -ANNUAL GIVING TUESDAY APPEALS -RP WARRIOR 5K WALK. PATIENTS FROM ACROSS THE US AND GLOBALLY PARTICIPATED IN THIS EVENT ORGANIZED BY RP WARRIOR, DAN SMITH, TO RAISE FUNDS TO FUEL RELAPSING POLYCHONDRITIS RESEARCH. DAN'S SON DESIGNED AND SOLD T-SHIRTS FOR THIS EVENT, WITH THE PROCEEDS DIRECTED TOWARD RP FOCUSED RESEARCH. -WATT'S THE DIFFERENCE CYCLING EVENT WAS INITIATED BY AN INDIVIDUAL IN HONOR OF HIS YOUNG NEPHEW WHO WAS DIAGNOSED WITH RP PRIOR TO HIS 9TH BIRTHDAY. THE GOAL OF THIS PATIENT-INITIATED FUNDRAISER IS TO "CHALLENGES EACH OF US TO "BE THE DIFFERENCE" FOR PATIENTS BATTLING RP. EACH PEDAL STROKE, COUPLED WITH YOUR CONTRIBUTIONS, HELPS BRING RESEARCHERS CLOSER TO SCIENTIFIC DISCOVERIES THAT WILL POTENTIALLY IMPROVE THE DIAGNOSIS AND TREATMENT OPTIONS FOR PATIENTS WITH RP - ULTIMATELY, THESE MAY LEAD TO A CURE". -2024 VIP RACE WEEKEND AT THE INDIANAPOLIS 500, HOSTED BY LONG TIME RELAPSING POLYCHONDRITIS FOUNDATION PARTNERS, KEVIN LEE AND JAMES HINCHCLIFFE, THIS EVENT RAISED FUNDS TO FUEL RP-RELATED AUTOIMMUNE DISEASE RESEARCH WHILE PROVIDING ATTENDEES WITH UNFORGETTABLE EXPERIENCES AT THE 108TH RUNNING OF THE INDIANAPOLIS 500. THIS DISTINCTIVE FUNDRAISING EVENT INCLUDED "SUITE" ACCESS TO THE LEGENDS DAY DRIVERS MEETING AND PRE-RACE REHEARSAL AS WELL AS A VIP GARAGE TOUR AND AUTOGRAPH SESSION. ADDITIONALLY, TICKETHOLDERS PARTICIPATED IN A CARB NIGHT HAPPY HOUR WITH JAMES HINCHCLIFF AND FRIENDS AT THE ROOT AND BONE IN BROAD RIPPLE, INDIANA PROCEEDS FROM THIS BENEFITED THE STOP AND GO FOUNDATION, THE RELAPSING POLYCHONDRITIS FOUNDATION AND AUTO IMMUNE DISEASE RESEARCH. -ANNUAL ERACE FOR RP: RACE FOR RP PARTNERED WITH PODIUM ESPORTS AND MONDAY NIGHT RACING FOR THE SIMULATION ERACING CHARITY EVENT. THE EVENT IS HOSTED ON THE IRACING PLATFORM AND HAS FEATURED RACES AT DAYTONA INTERNATIONAL SPEEDWAY'S ROAD COURSE AND CIRCUIT OF THE AMERICAS (COTA) IN AUSTIN, TX. THANKS TO THE GENEROSITY OF A LONG-STANDING PARTNER WHO HAS PROVIDED A 3:1 MATCH FOR GIFTS RECEIVED, THE SIM ERACE RAISES SIGNIFICANT FUNDS TO SUPPORT RP AND RELATED AUTOIMMUNE RESEARCH -DRIVING RESEARCH (2023): HOSTED BY IMSA RACECAR DRIVER, JACKSON LEE. DONORS WHO MADE A GIFT OF 100 OR MORE TO SUPPORT RP AND RELATED AUTOIMMUNE DISEASE RESEARCH WERE ABLE TO GET THEIR NAME (OR THE NAME OF WHO THEY'RE "RACING FOR") ON JACKSON'S RACECAR. AS A SPECIAL THANK YOU, ANYONE WHO DONATED WERE INVITED TO A TRACKSIDE MEET AND GREET, PROVIDED THEY ATTENDED THE RACE IN SEBRING. -KETTLEBELL FUNDRAISER: THE RP FOUNDATION WAS THE KETTLEBELL ONE HOUR LONG CYCLE INTERNATIONAL CHARITY EVENT'S FEATURED CHARITY IN 2023. -NEIL'S MILESTONE BIRTHDAY: IN LIEU OF BIRTHDAY GIFTS, GIFTS WERE DIRECTED TO THE RP FOUNDATION TO SUPPORT RP AND RELATED AUTOIMMUNE DISEASE RESEARCH. THE RP FOUNDATION IS MAKING PROGRESS IN ALL THREE PILLARS OF OUR PURPOSE, AS EVIDENCED BY THE 300% INCREASE IN THE NUMBER OF DONORS THAT THE FOUNDATION REALIZED IN 2022. LOOKING AHEAD: THE RP FOUNDATION IS INCREDIBLY THANKFUL FOR THE RP AND RELATED AUTOIMMUNE DISEASE DISCOVERIES AND ADVANCEMENTS THAT OUR TALENTED CLINICAL RESEARCH PARTNERS CONTINUE TO MAKE. WITH ADDITIONAL SUPPORT, WE WILL CONTINUE TO BE A SOURCE OF HOPE AND A CATALYST FOR RESEARCH THAT WILL ULTIMATELY TREAT AND CURE RP. |
| FORM 990, PAGE 6, PART VI, LINE 2 | MICHAEL LINN NANCY LINN VICE CHAIR CHAIR SIBLINGS |
| 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: |