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)
![]() |
(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.") .. | 10,961,768 | 12,393,471 | 15,979,553 | 15,780,800 | 13,240,424 | 68,356,016 |
| 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 | 10,961,768 | 12,393,471 | 15,979,553 | 15,780,800 | 13,240,424 | 68,356,016 |
| 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) .. | 5,190,495 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 63,165,521 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 10,961,768 | 12,393,471 | 15,979,553 | 15,780,800 | 13,240,424 | 68,356,016 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 48,732 | 36,120 | 71,866 | 85,897 | 264,134 | 506,749 |
| 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 | 69,123,436 | |||||
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.") . | ||||||
| 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) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (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 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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| SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: | MISCELLANEOUS - |
| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
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| FORM 990, PART III, LINE 4A | THE LFA SPEARHEADED THE ANNUAL GLOBAL OBSERVANCE OF WORLD LUPUS DAY ON MAY 10. WE DEVELOPED AND EXECUTED A WORLD-WIDE "MAKE LUPUS VISIBLE" SOCIAL MEDIA CAMPAIGN TO SHARE LUPUS EDUCATION FACTS AND STATISTICS, LEVERAGED THROUGH THE SHARING OF VARIOUS TOOLS, MESSAGES AND IMAGES TO SUCCESSFULLY RAISE AWARENESS OF LUPUS AND ITS IMPACT ON A GLOBAL SCALE. IN PARTNERSHIP WITH THE WORLD LUPUS FEDERATION (WLF), THE LFA DEVELOPED AWARENESS AND ADVOCACY MESSAGES, TOOLS, MATERIALS, LUPUS FACT SHAREABLE IMAGES AND MORE -- ALL PART OF A DIGITAL LUPUS AWARENESS TOOLKIT HOSTED ON WORLDLUPUSDAY.ORG. WE EXECUTED A STRATEGIC COMMUNICATIONS EFFORT TO SHARE AND PROMOTE THE TOOLKIT TO ALL WLF MEMBERS AND SUPPORTERS BOTH LEADING UP TO AND ON WORLD LUPUS DAY AS PART OF A GLOBAL AND COLLABORATIVE SOCIAL MEDIA CAMPAIGN. THROUGH OUR ADVOCACY EFFORTS IN 2024, WE SUPPORTED LUPUS RESEARCH, ACCESS AND EDUCATION BY: HOSTING OVER 320 LUPUS ADVOCATES IN WASHINGTON, DC FOR THE 2024 NATIONAL LUPUS ADVOCACY SUMMIT, THE COUNTRY'S LARGEST LUPUS ADVOCACY EVENT. ADVOCATES MET WITH NEARLY 200 MEMBERS OF CONGRESS AND THOUSANDS MORE JOINED ONLINE, SENDING 1,300 EMAILS TO THEIR ELECTED OFFICIALS URGING THEM TO INCREASE FUNDING FOR LUPUS RESEARCH AND EDUCATION PROGRAMS AND ADVANCE POLICIES THAT IMPROVE THE LIVES OF ALL PEOPLE WITH LUPUS. ADVOCATED FOR $173 MILLION IN FUNDING FOR LUPUS-SPECIFIC RESEARCH AND EDUCATION PROGRAMS FOR FY25, WHICH IF ENACTED WOULD BE THE MOST FUNDING CONGRESS HAS EVER APPROVED FOR LUPUS-SPECIFIC PROGRAMS IN A SINGLE YEAR. KEY PROVISIONS INCLUDED IN FY25 APPROPRIATIONS BILLS: $20 MILLION TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM WITHIN THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION, A 100% INCREASE OVER FY24, WHICH IF ENACTED WOULD BRING TOTAL FUNDING FOR THE PROGRAM TO MORE THAN $115 MILLION SINCE ITS CREATION IN 2003 $10 MILLION FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, WHICH WOULD BRING TOTAL FUNDING FOR THE PROGRAM TO NEARLY $90 MILLION SINCE IT WAS FIRST FUNDED IN FISCAL YEAR 2017 $2 MILLION FOR THE OFFICE OF MINORITY HEALTH AND THE NATIONAL LUPUS TRAINING, OUTREACH, AND CLINICAL TRIAL EDUCATION PROGRAM, A PROGRAM THAT IS WORKING TO INCREASE PARTICIPATION IN LUPUS CLINICAL TRIALS, BREAK DOWN BARRIERS AND ENSURE TRIAL PARTICIPANTS ARE REPRESENTATIVE OF THE LUPUS POPULATION. APPROXIMATELY $50 BILLION $48 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH AND WHICH PROVIDED AN ESTIMATED $140 MILLION FOR LUPUS RESEARCH IN 2024 LEADING THE LUPUS RESEARCH ACTION NETWORK (LRAN), A PEER-TO-PEER TRAINING AND EDUCATION PROGRAM CREATED TO INCREASE PATIENT PARTICIPATION IN LUPUS RESEARCH, WITH A SPECIFIC FOCUS ON POPULATIONS THAT ARE UNDERREPRESENTED IN LUPUS RESEARCH AND CLINICAL TRIALS. LRAN IS A KEY COMPONENT OF THE LFA'S IMPACT+ (INCREASING MINORITY PARTICIPATION AND AWARENESS IN CLINICAL TRIALS) GRANT WITH THE U.S DEPARTMENT OF HEALTH AND HUMAN SERVICES (HHS) OFFICE OF MINORITY HEALTH (OMH). IN 2024, THE LRAN PROGRAM INCLUDED AN IN-PERSON TRAINING AND FOUR ONLINE CONTINUING EDUCATION EVENTS THAT TAUGHT COMMUNITY LEADERS ABOUT CLINICAL TRIALS, THE BARRIERS THAT LIMIT PARTICIPATION AND HOW TO TALK ABOUT TRIALS IN THEIR OWN COMMUNITIES ON A PEER-TO-PEER BASIS. |
| FORM 990, PART III, LINE 4A | SECURING ADDITIONAL CONGRESSIONAL SUPPORT FOR THE HELP COPAYS ACT AND SAFE STEP ACT TO IMPROVE ACCESS TO CARE AND REDUCE COSTS FOR PEOPLE WITH LUPUS. THE BILLS WOULD IMPROVE COPAY ASSISTANCE PROGRAMS AND LIMIT STEP THERAPY, RESPECTIVELY AND HELP ENSURE PEOPLE WITH LUPUS HAVE ACCESS TO NEEDED TREATMENTS. THE LUPUS FOUNDATION OF AMERICA'S ADVOCACY HELPED GENERATE 235 COSPONSORS FOR THE SAFE STEP ACT AND 130 FOR THE HELP COPAYS ACT. MOREOVER, IN 2024, FOUR STATES ILLINOIS, NEW MEXICO, NEW YORK, AND VERMONT SIGNED NEW STEP THERAPY PROTECTIONS INTO LAW, BRINGING THE TOTAL TO NEARLY 36 STATES THAT HAVE ENACTED SOME FORM OF STEP THERAPY PROTECTION. LEADING ADVOCACY EFFORTS TO SUPPORT AN EXTENSION OF TELEHEALTH BENEFITS INCLUDING, HELPING TO PASS LEGISLATION IN CONGRESSIONAL COMMITTEES AND AUTHORING AN OPED, TELEHEALTH ACCESS IMPROVES CARE FOR PEOPLE WITH LUPUS, PUBLISHED NATIONWIDE IN REAL CLEAR HEALTH. CONTINUING TO ELEVATE THE PATIENT VOICE IN DRUG DEVELOPMENT, PROVIDING THE LUPUS PATIENT PERSPECTIVE TO CONGRESS AND THE FDA, INCLUDING AS AN ACTIVE LEADER IN PATIENT FOCUSED DRUG DEVELOPMENT (PFDD) WORKS, A GROUP OF TOP PATIENT ORGANIZATIONS WORKING TOGETHER TO ADVANCE PATIENT FOCUSED-DRUG DEVELOPMENT, AND INFORM FDA REGULATORY DECISION-MAKING. THE LUPUS FOUNDATION OF AMERICA ENGAGED THE FDA AS IT DEVELOPED GUIDANCE ON DIVERSITY ACTION PLANS TO IMPROVE ENROLLMENT IN CLINICAL TRIALS FROM UNDERREPRESENTED POPULATIONS AND THE USE OF REAL WORLD DATA AND REAL WORLD EVIDENCE. MOREOVER, THE LFA AND PFDD WORKS LEADERS CALLED ON THE FDA TO MODERNIZE THE AGENCY'S ADVISORY COMMITTEE PROCESS AND THE USE OF ADVISORY COMMITTEES IN NEW DRUG REVIEWS. SERVING AS CO-CHAIR OF THE NIAMS COALITION, SUPPORTING THE NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES, WHICH IS THE LEAD NIH INSTITUTE FOR LUPUS RESEARCH. THE LUPUS FOUNDATION OF AMERICA ALSO CHAIRS THE COALITION'S PATIENT ENGAGEMENT WORK GROUP THAT IS ELEVATING THE PATIENT VOICE AT NIH AND IN NIH SUPPORTED LUPUS RESEARCH. CONTINUING TO LEAD THE MAPRX COALITION, A GROUP OF MORE THAN 60 NATIONAL PATIENT ADVOCACY ORGANIZATIONS DEDICATED TO PROTECTING AND STRENGTHENING THE MEDICARE PART D PRESCRIPTION DRUG BENEFIT FOR THE 53 MILLION AMERICANS ENROLLED IN THE PROGRAM. AS THE LEADER OF THE COALITION, THE LFA ON ENGAGED CONGRESS AND THE CENTERS FOR MEDICARE AND MEDICAID SERVICES THROUGHOUT THE YEAR, INCLUDING HOSTING TWO CONGRESSIONAL BRIEFINGS, SERVING AS A FEATURED SPEAKER AT PATIENT ORGANIZATION EVENTS, AND CONDUCTING OTHER OUTREACH DESIGNED TO EDUCATE LEADERS ON CAPITOL HILL AND THE BROADER PATIENT ADVOCACY COMMUNITY ABOUT MEDICARE POLICY AND THE IMPORTANCE OF PART D TO PEOPLE WITH LUPUS. OF PARTICULAR FOCUS IN 2024 WAS THE IMPLEMENTATION OF KEY PROVISIONS OF THE INFLATION REDUCTION ACT, INCLUDING: A HISTORIC $2,000 OUT-OF-POCKET CAP, THAT FOR THE FIRST TIME EVER, CAPS OUT-OF-POCKET PRESCRIPTION DRUG COSTS FOR PEOPLE WITH LUPUS, WHO PAY $0 AFTER HITTING THE CAP. THE MEDICARE PRESCRIPTION PAYMENT PLAN, A NEW PROGRAM THAT ALLOWS PEOPLE WITH LUPUS TO SPREAD OUT PAYMENTS FOR PRESCRIPTION DRUGS OVER THE YEAR, INTEREST FREE. EXPANDED ELIGIBILITY FOR THE LOW-INCOME SUBSIDY IN PART D TO INCREASE AFFORDABILITY. THE MAPRX COALITION ALSO PRODUCED MULTIPLE EDUCATIONAL RESOURCES, CUSTOMIZED FOR PEOPLE WITH LUPUS, TO HELP MEDICARE BENEFICIARIES NAVIGATE THESE NEW BENEFITS AND THE ANNUAL MEDICARE OPEN ENROLLMENT PERIOD. RESOURCES INCLUDED A GUIDE TO MEDICARE OPEN ENROLLMENT; A GUIDE TO THE MEDICARE PRESCRIPTION PAYMENT PLAN, AN INFOGRAPHIC AND A CALL CENTER SCRIPT TO HELP THOSE WHO WORK WITH PEOPLE LIVING WITH LUPUS AND OTHER MEDICARE BENEFICIARIES. THE MAPRX COALITION PRODUCED TWO CRITICAL PAPERS THAT HELPED TO INFORM IRA IMPLEMENTATION AND ADVANCE THE MEDICARE LEGISLATIVE AND REGULATORY POLICY. THESE INCLUDED: THE IRA'S UNINTENDED CONSEQUENCES FOR MEDICARE PART D IN 2025 AND 2026, AND MINIMIZING AFFORDABILITY CHALLENGES AND BENEFICIARY CONFUSION. AND THE COALITION CONTINUED TO PLAY A LEADING ROLE IN ADVOCATING FOR MEDICARE COVERAGE OF ANTI-OBESITY MEDICATIONS, WHICH ARE IMPORTANT NEW OPTIONS TO TREAT OBESITY, A DISEASE THAT, LIKE LUPUS, DISPROPORTIONATELY IMPACTS WOMEN AND WOMEN OF COLOR. LEADING A NETWORK OF NEARLY 44,000 GRASSROOTS ADVOCATES FROM EVERY STATE AND 435 CONGRESSIONAL DISTRICTS WHO HELPED ADVANCE LUPUS-RELATED PUBLIC POLICY PRIORITIES. |
| FORM 990, PART VI, SECTION A, LINE 7A | THE CHAPTERS HAVE THE AUTHORITY TO ELECT THE MEMBERS OF THE NATIONAL COUNCIL REPRESENTATIVES OF THE BOARD OF THE DIRECTORS. |
| FORM 990, PART VI, SECTION A, LINE 7B | THE CHAPTERS HAVE THE AUTHORITY TO VOTE ON ANY PROPOSED CHANGES BY THE BOARD OF THE DIRECTORS TO THE FOUNDATION'S BYLAWS. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE FOUNDATION HIRES AN INDEPENDENT ACCOUNTING FIRM TO PREPARE THE FORM 990. A COPY OF THE FINAL DRAFT OF THE FORM 990 IS REVIEWED AND APPROVED BY THE FINANCE COMMITTEE VIA A TELEPHONE CONFERENCE. ONCE APPROVED BY THE FINANCE COMMITTEE, A COMPLETE COPY OF THE FORM 990 IS DISTRIBUTED TO ALL MEMBERS OF THE BOARD OF DIRECTORS BEFORE FILING THE FORM WITH THE INTERNAL REVENUE SERVICE. |
| FORM 990, PART VI, SECTION B, LINE 12C | AT THE FOUNDATION'S BOARD MEETING IN THE FALL, THE CONFLICT OF INTEREST STATEMENT AND QUESTIONNAIRE ARE COMPLETED AND SIGNED BY EACH OFFICER, DIRECTOR, COMMITTEE MEMBER AND KEY EMPLOYEE. ALL CONFLICT OF INTEREST STATEMENTS AND QUESTIONNAIRES ARE REVIEWED BY THE PRESIDENT & CEO AND CHIEF FINANCIAL OFFICER WHO NOTE ANY ACTUAL OR POTENTIAL CONFLICTS. WHEN THERE IS A DOUBT AS TO WHETHER A CONFLICT OF INTEREST EXISTS, THE MATTER SHALL BE RESOLVED BY A VOTE OF THE BOARD OF DIRECTORS (OR ITS COMMITTEE), EXCLUDING THE PERSON CONCERNING WHOSE SITUATION THE DOUBT HAS ARISEN. THERE HAVE BEEN NO CONFLICTS NOTED DURING THE YEAR. |
| FORM 990, PART VI, SECTION B, LINE 15 | THE EXECUTIVE COMMITTEE OF THE BOARD (EC) CONDUCTS AN ANNUAL PERFORMANCE EVALUATION OF THE PRESIDENT & CEO AND RECOMMENDS SALARY LEVEL CHANGES TO THE BOARD OF DIRECTORS FOR APPROVAL. THE RECOMMENDED CHANGES ARE BASED ON THE MOST CURRENTLY AVAILABLE COMPARABILITY DATA FROM THE MANAGEMENT COMPENSATION SURVEY STUDY PUBLISHED JOINTLY BY THE NATIONAL HEALTH COUNCIL AND THE NATIONAL HUMAN SERVICES ASSEMBLY. ONCE APPROVED, ONE OF THE MEMBERS OF THE EC, GENERALLY THE CHAIRMAN OR THE TREASURER, NOTIFIES THE CHIEF FINANCIAL OFFICER OF THE NEW APPROVED COMPENSATION ARRANGEMENT FOR THE PRESIDENT & CEO. ALL OTHER KEY EMPLOYEES' ANNUAL PERFORMANCE EVALUATIONS ARE CONDUCTED BY THE PRESIDENT & CEO AND THEIR APPROVED ANNUAL SALARY INCREASES ARE DOCUMENTED ON THEIR ANNUAL PERFORMANCE EVALUATION FORM. |
| FORM 990, PART VI, SECTION C, LINE 19 | THE FOUNDATION MAKES ITS FINANCIAL STATEMENTS, FEDERAL FORM 990, AND ANNUAL REPORT AVAILABLE TO THE PUBLIC UPON REQUEST AND BY POSTING THEM ON ITS WEBSITE. ALL OTHER GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST. |
| FORM 990, PART IX, LINE 11G | ACCOUNTING SUPPORT SERVICES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 407,163. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 407,163. RESEARCH SUPPORT SERVICES: PROGRAM SERVICE EXPENSES 183,434. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 183,434. ADVOCACY SUPPORT SERVICES: PROGRAM SERVICE EXPENSES 554,827. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 554,827. ADMINISTRATIVE SUPPORT: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 51,692. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 51,692. PATIENT EDUCATION & SUPPORT SERVICE: PROGRAM SERVICE EXPENSES 1,027,195. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,027,195. DEVELOPMENT SUPPORT: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 51,921. TOTAL EXPENSES 51,921. MARKETING & COMMUNICATIONS SUPPORT: PROGRAM SERVICE EXPENSES 207,001. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 207,001. |
| FORM 990, PART XI, LINE 9: | REFUND OF GRANTS 50,647. |
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| Software Version: |