2024-10-01T08:21:04-05:00 2023-12-31 521392008 GELMAN ROSENBERG & FREEDMAN 4550 MONTGOMERY AVE SUITE 800N BETHESDA MD 208142930 990 2023-01-01 832016277 I AM ALS IAMA 2025051256 1200 PENNSYLVANIA AVE NW 14135 WASHINGTON DC 20044 PETER BOWEN BOARD CHAIR 2025051256 2024-10-01 1 0 ELIZABETH W HELLER P00397829 3019519090 2023 2024-10-15 13:58:12Z PETER BOWEN 1200 PENNSYLVANIA AVE NW 14135 WASHINGTON DC 20044 2343867 0 X WWW.IAMALS.ORG X 2018 IL SEE PART III, LINE 1. 11 11 13 236 0 0 1609370 2290726 0 0 1004 5295 21477 30757 1631851 2326778 0 4000 0 0 1453539 1415274 0 0 102801 837917 755422 2291456 2174696 -659605 152082 1680946 1851960 38149 57081 1642797 1794879 X I AM ALS EXISTS TO SUPPORT AND MOBILIZE THE ALS COMMUNITY FOR THE PURPOSES OF IMPROVING QUALITY OF LIFE, RAISING AWARENESS, INCREASING FUNDING FOR RESEARCH AND ACCESS, AND IDENTIFYING TREATMENTS AND CURES FOR ALS. 0 0 504304 COMMUNITY SUPPORTTHE I AM ALS COMMUNITY SUPPORT TEAM PROVIDES DIRECT EMOTIONAL SUPPORT SERVICES, SUPPORT GROUPS, PEER MATCHING, AND INFORMATION AND RESOURCES TO INDIVIDUALS LIVING WITH ALS, LOVED ONES, AND CAREGIVERS. 494192 GOVERNMENT AFFAIRS, POLICY, AND RESEARCHI AM ALS ENABLES THE COMMUNITY ADVOCATES TO INFLUENCE CHANGES TO FEDERAL FUNDING AND TRANSFORM RESEARCH SYSTEMS, INSTITUTIONAL POLICY, AND REGULATORY PROCESSES WITH THE GOALS OF INCREASING RESEARCH FUNDING; IMPROVING PATIENT ACCESS TO TREATMENT; AND SPEEDING THE DEVELOPMENT AND ACCESS OF TREATMENTS AND CURES FOR PEOPLE LIVING WITH ALS. 402080 COMMUNITY ORGANIZING AND COMMUNICATIONS I AM ALS MOBILIZES THE ALS COMMUNITY AND FACILITATES WEEKLY TOPIC-BASED, SELF-ORGANIZED TEAMS. INDIVIDUAL ADVOCATES ENGAGE IN VIRTUAL, DIGITAL, AND IN-PERSON ACTIONS TO CATALYZE POLICY CHANGE AND RESEARCH PROGRESS TO END ALS; INCREASE PUBLIC AND PROFESSIONAL AWARENESS AND COMPETENCY; CHANGE POLICY OUTCOMES; IMPROVE TRIALS AND TREATMENT ACCESS; AND MORE. 194505 30757 COMMUNICATIONS 15429 4000 PATIENT FELLOWS 10720 RESEARCH PROGRAM 220654 4000 30757 1621230 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 17 0 1 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 11 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL KS KY MD MI MN MS NH NJ NM NY OR PA RI SC TN UT VA WV WI MA NC X X PETER BOWEN 2025051256 1200 PENNSYLVANIA AVE NW 14135 WASHINGTON DC 20044 PETER BOWEN BOARD CHAIR 2.00 X X 0 0 0 JENNY FORTNER BOARD TREASURER 2.00 X X 0 0 0 PEGGY PLEWS- OGAN BOARD SECRETARY 2.00 X X 0 0 0 BRIAN WALLACH CO-FOUNDER 2.00 X 0 0 0 SANDRA ABREVAYA CO-FOUNDER 2.00 X 0 0 0 DAN TATE JR BOARD MEMBER 2.00 X 0 0 0 JANO CABRERA BOARD MEMBER 2.00 X 0 0 0 JUAN A REYES BOARD MEMBER 2.00 X 0 0 0 MICHAEL O'NEIL BOARD MEMBER 2.00 X 0 0 0 MICHAEL SLABY BOARD MEMBER 2.00 X 0 0 0 NEEL PAREKH BOARD MEMBER 2.00 X 0 0 0 ANDREA GOODMAN CEO 40.00 X 176612 0 23330 ADITI NARAYAN VP OF COMMUNITY SUPPORT 40.00 X 136199 0 30963 MICHAEL J LECKER VP OF ORGANIZING 40.00 X 115041 0 21852 427852 0 76145 3 0 1 0 WINNING STRATEGIES WASHINGTON LLC 160 WEST STATE STREET STE 4 TRENTON NJ 08608 LOBBYING AND STAFF SERVICES 120000 1 250000 2040726 2290726 5295 5295 47846 17089 30757 30757 2326778 30757 0 5295 X 4000 4000 199943 125324 37956 36663 914250 799095 87807 27348 38892 32269 4389 2234 181027 150194 20433 10400 81162 67338 9161 4663 781 781 81753 81753 101000 101000 219884 178105 37248 4531 35674 19954 11416 4304 36857 24931 11668 258 62549 29827 23734 8988 55871 45959 9912 29692 25292 3096 1304 1179 226 953 11606 11606 RECRUITMENT FEES 40272 630 39642 DONATION FEES 25731 25731 COMMUNITY ENGAGEMENT 20691 16984 1861 1846 PAYROLL PROCESSING 10703 10703 21179 102 20815 262 2174696 1621230 450665 102801 924058 1300164 386710 387004 140000 204043 151013 19581 12327 6554 1452 1680946 1851960 38149 57081 38149 57081 X 1341564 1494879 301233 300000 1642797 1794879 1680946 1851960 152082 0 X 0 1 X 1 0 X 2574735 1631151 3338131 1609370 2290726 11444113 2574735 1631151 3338131 1609370 2290726 11444113 1047452 10396661 16751 1326 162 1004 5295 24538 470 225 695 11469346 73945 0.90650 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 101000 101000 2073696 2174696 258735 64684 0 0 258735 258735 388103 101000 101000 64684 64684 97026 0 2326778 0 2326778 0 2326778 2174696 0 2174696 0 2174696 X X X X 0 0 0 0 0 0 0 0 0 ANDREA GOODMAN CEO 176612 0 0 0 0 0 2917 0 20413 0 199942 0 0 0 ADITI NARAYAN VP OF COMMUNITY SUPPORT 136199 0 0 0 0 0 5682 0 25281 0 167162 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 BRIAN WALLACH AND SANDRA ABREVAYA HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 WAS PREPARED BY THE OUTSIDE ACCOUNTANTS AND REVIEWED BY THE ORGANIZATION'S AUDIT COMMITTEE. THE RETURN WAS THEN PROVIDED TO THE FULL BOARD, PRIOR TO FILING WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C EACH DIRECTOR, OFFICER, KEY PERSON AND MEMBER OF A COMMITTEE ANNUALLY SIGNS A CONFLICT OF INTEREST STATEMENT, WHICH AFFIRMS THAT SUCH PERSON HAS RECEIVED, READ, UNDERSTANDS AND AGREES WITH THE POLICY. A CONFLICT OF INTEREST ARISES WHEN A PERSON HAS AN EXISTING OR POTENTIAL FINANCIAL INTEREST OR OTHER MATERIAL INTEREST THAT IMPAIRS, OR APPEARS TO IMPAIR HIS OR HER INDEPENDENCE OR OBJECTIVITY IN THE DISCHARGE OF RESPONSIBILITIES AND DUTIES TO I AM ALS. IF A CONFLICT ARISES EACH RELATED PARTY DISCLOSES ANY DIRECT OR INDIRECT FINANCIAL OR OTHER MATERIAL INTEREST WHICH HE OR SHE OR HIS OR HER RELATIVES HAS OR REASONABLY EXPECTS TO HAVE IN A RELATED PARTY TRANSACTION PRIOR TO OR AS SOON AS PRACTICABLE FOLLOWING THE START OF ANY NEGOTIATIONS WITH RESPECT TO SUCH MATTER. INTERESTS WILL BE DISCLOSED IN WRITING TO THE SECRETARY OF THE CORPORATION. THE SECRETARY OF THE CORPORATION PROVIDES A COPY OF ALL SUCH DISCLOSURES TO THE DIRECTORS OF THE CORPORATION. THE BOARD REVIEWS ALL TRANSACTIONS, AGREEMENTS OR ANY OTHER ARRANGEMENTS BETWEEN THE CORPORATION AND A RELATED PARTY, AND ANY OTHER TRANSACTIONS WHICH MAY INVOLVE A POTENTIAL CONFLICT OF INTEREST. NO RELATED PARTY VOTES ON ANY MATTER WITH RESPECT TO WHICH HE OR SHE HAS BEEN DETERMINED BY THE BOARD TO HAVE A FINANCIAL INTEREST. IF THE BOARD OR COMMITTEE HAS REASONABLE CAUSE TO BELIEVE THAT A MEMBER HAS FAILED TO DISCLOSE ACTUAL OR POSSIBLE CONFLICTS OF INTEREST, IT INFORMS THE MEMBER OF THE BASIS FOR SUCH BELIEF AND AFFORD THE MEMBER AN OPPORTUNITY TO EXPLAIN THE ALLEGED FAILURE TO DISCLOSE. IF, AFTER HEARING THE MEMBER'S RESPONSE AND INVESTIGATING FURTHER, AS WARRANTED BY THE CIRCUMSTANCES, THE BOARD OR COMMITTEE DETERMINES THAT THE MEMBER HAS IN FACT FAILED TO DISCLOSE AN ACTUAL OR POSSIBLE CONFLICT OF INTEREST, THE BOARD TAKES APPROPRIATE CORRECTIVE ACTION. FORM 990, PART VI, SECTION B, LINE 15 TO SET THE CEO'S INITIAL SALARY THE ORGANIZATION SOUGHT DATA FROM SEVERAL SOURCES TO ASSESS THE APPROPRIATE COMPENSATION RANGE, INCLUDING AN INDEPENDENT SEARCH FIRM AND REVIEWED SEVERAL COMPENSATION STUDIES FROM PROFESSIONALS FOR NON-PROFITS TO KOYA LEADERSHIP PARTNERS. WE DETERMINED THE KEY CRITERIA FOR OUR DECISION WERE 1) COMPETITIVE DATA FROM THE SOURCES LISTED ABOVE, 2) QUALIFICATIONS OF THE CANDIDATE INCLUDING EXPERIENCE TO DATE AND GRADUATE TRAINING, AND 3) OUR COMPENSATION PHILOSOPHY THAT WE SHOULD PAY COMPETITIVELY GIVEN THE DEMANDING AND URGENT TIMELINE OF THE JOB. THE SEARCH COMMITTEE OF THE BOARD DEVELOPED THE CRITERIA VIA PHONE CONVERSATIONS AND EMAIL IN PARTNERSHIP WITH THE INDEPENDENT SEARCH FIRM. THIS PROPOSAL WAS PRESENTED TO THE EXECUTIVE BOARD ON A WEEKLY CALL AND SENT IN WRITING TO THE FULL BOARD FOR DISCUSSION AT A BOARD MEETING. THE CEO'S MOST RECENT PERFORMANCE REVIEW WAS PRESENTED TO THE FULL BOARD ON THE MARCH 2023 BOARD MEETING. IN ADDITION TO THE CEO'S SALARY, THE BOARD APPROVES THE ANNUAL BUDGET, WHICH INCLUDES THE SALARIES OF ALL EMPLOYEES. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC PER REQUEST. FORM 990, PART IX, LINE 11G ADVOCACY: PROGRAM SERVICE EXPENSES 124,104. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 124,104. COMMUNICATION: PROGRAM SERVICE EXPENSES 54,001. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 4,531. TOTAL EXPENSES 58,532. CONSULTING: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 37,248. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 37,248.