2022-11-02T15:20:33-05:00 2021-12-31 521392008 GELMAN ROSENBERG & FREEDMAN 4550 MONTGOMERY AVE SUITE 800N BETHESDA MD 208142930 990 2021-01-01 832016277 I AM ALS IAMA 2025051256 1200 PENNSYLVANIA AVE NW 14135 WASHINGTON DC 20044 MICHAEL SLABY TREASURER AND SECRETARY 2025051256 2022-11-02 1 MICHAEL SLABY 999009999 RICHARD J LOCASTRO CPA P00288314 3019519090 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z LOUISE LANGHEIE 1200 PENNSYLVANIA AVE NW 14135 WASHINGTON DC 20044 3408833 0 X WWW.IAMALS.ORG X 2018 IL SEE PART III, LINE 1. 11 10 13 100 0 0 1631151 3338131 0 0 1326 2386 0 5317 1632477 3345834 500000 2000 0 0 888772 1207913 0 0 92689 977519 1164617 2366291 2374530 -733814 971304 1045740 2432581 114642 55179 931098 2377402 TO RAISE AWARENESS AS WELL AS SUPPORT, CARE AND FUNDING FOR AMYOTROPHIC LATERAL SCLEROSIS ("ALS") AND THE SEARCH FOR CURES FOR ALS. 0 0 419174 DELIVER FOR PATIENTS - DELIVER A COMPREHENSIVE NAVIGATION PROGRAM SERVICING ALS PATIENTS AND THEIR FAMILIES TO EMPOWER PATIENTS AND THEIR FAMILIES WITH RELEVANT MEDICAL AND RESEARCH INFORMATION, SUPPORT THEM EMOTIONALLY, CONNECT THEM WITH PRACTICAL RESOURCES, AND HELP THEM BUILD A COMMUNITY AROUND THEM. I AM ALS NAVIGATION WILL CONNECT THOSE IT SERVES TO THE PROGRAMS AND SERVICES THAT BEST FIT THEIR NEEDS AND BE A PARTNER EVERY STEP OF THE WAY IN THEIR ALS JOURNEY. 1367696 2000 4847 MOBILIZE PATIENTS AND THEIR NETWORKS AND TRANSFORM PUBLIC UNDERSTANDING - PROVIDE A WAY FOR THOSE IMPACTED BY ALS TO SERVE AS A DRIVING FORCE IN MAKING PROGRESS IN THE ALS FIGHT. ENSURE THAT THOSE OUTSIDE OF THE ALS COMMUNITY KNOW WHAT ALS IS AND PROVIDE TOOLS FOR AN ARMY OF EMPOWERED ADVOCATES TO MAKE REAL PROGRESS ON POLICY AND LEGISLATIVE GOALS, INCREASE FUNDING FOR ALS RESEARCH, AND ENGAGE EVERYONE IN THIS FIGHT. 33605 INCREASE RESEARCH FUNDING, PATIENT ACCESS TO TREATMENT, AND SPEEDING OF TREATMENTS AND CURES. BUILD AN ALS RESEARCH PLATFORM TO ENABLE TRANSFORMATIVE RESEARCH AND EXECUTE ON LEGISLATIVE PRIORITIES TO DRAMATICALLY INCREASE RESEARCH FUNDING, IMPROVE PATIENT ACCESS TO POTENTIALLY LIFE-CHANGING THERAPIES, AND DELIVER NEEDED SERVICES AND CARE FOR PEOPLE LIVING WITH ALS AND THEIR CAREGIVERS AND FUND RESEARCH GRANTS WITH THE AIM TO ADVANCE RESEARCH PROGRESS AND EXPAND TREATMENT ACCESS FOR PEOPLE LIVING WITH ALS. 1820475 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 1 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 14 0 1 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 10 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 X PETER BOWEN 2025051256 1200 PENNSYLVANIA AVE NW 14135 WASHINGTON DC 20044 DANIELLE CARNIVAL CEO (UNTIL 07/2021) 50.00 X X 142188 0 6382 MICHAEL SLABY DIR., THEN INTERIM CEO (FROM 06/21) 50.00 X X 143645 0 0 LOUISE LANGHEIER BOARD CHAIR 5.00 X X 0 0 0 JESSIE ROSSMAN TREASURER & SECRETARY 5.00 X X 0 0 0 BRIAN WALLACH CO-FOUNDER 30.00 X 0 0 0 SANDRA ABREVAYA CO-FOUNDER 15.00 X 0 0 0 CLARE DURRETT DIRECTOR 4.00 X 0 0 0 DANIEL TATE JR DIRECTOR 15.00 X 0 0 0 DIVYA SILBERMAN DIRECTOR 10.00 X 0 0 0 EDWIN COHEN DIRECTOR 4.00 X 0 0 0 JANO CABRERA DIRECTOR 4.00 X 0 0 0 PETER BOWEN DIRECTOR 4.00 X 0 0 0 SUZANNE ANTHONY CHIEF OPERATING OFFICER 40.00 X 146813 0 6778 THERESA GARNER COMMUNICATIONS & ORGANIZING DIRECTOR 40.00 X 139375 0 7889 ADITI NARAYAN DIRECTOR OF COMMUNITY SUPPORT 40.00 X 123600 0 6573 695621 0 27622 5 0 1 0 REDTAIL PRODUCTION SERVICES LLC 5757 W CENTURY BLVD 810 LOS ANGELES CA 90045 VIDEO PRODUCTION 409000 VISIONARY MISFITS 25 MULBERRY ST RHINEBECK NY 12572 VIDEO PRODUCTION 143645 2 234000 3104131 3338131 162 162 53295 51071 2224 2224 2224 16775 11928 4847 4847 MISCELLANEOUS REVENUE 900099 470 470 470 3345834 4847 0 2856 X 2000 2000 292215 228261 53842 10112 696944 548366 115943 32635 32632 15619 17013 106356 94424 11932 79766 54327 25439 79506 79506 24000 24000 729410 670484 44361 14565 57080 56703 377 36858 24964 10455 1439 101356 79517 21839 22902 17432 5470 8464 2293 6010 161 813 573 240 8402 8402 RECRUITMENT FEES 44515 44515 DONATION FEES 33777 33777 LICENSES & REGISTRATION 8683 8683 PAYROLL PROCESSING 3392 3392 5459 1512 3947 2374530 1820475 461366 92689 615595 1363548 74471 249357 630000 349643 173045 6031 10077 0 6554 1045740 2432581 13742 55179 100900 114642 55179 X 527702 1557787 403396 819615 931098 2377402 1045740 2432581 971304 475000 0 X 0 1 X 1 0 X 2574735 1631151 3338131 7544017 2574735 1631151 3338131 7544017 1184980 6359037 16751 1326 162 18239 470 470 7562726 4847 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 39000 0 0 39000 0 PART II-B, LINE 1: MEETINGS WITH MEMBERS, ORGANIZING COMMUNITY TO OUTREACH TO MEMBERS, COORDINATION WITH MEMBER STAFF, WEBSITE POSTINGS AND SOCIAL MEDIA TO ADVOCATE ON SPECIFIC LEGISLATIVE PRIORITIES. 0 X 3556667 210833 210833 3345834 0 3345834 2585363 210833 210833 2374530 0 2374530 PART X, LINE 2: FOR THE YEAR ENDED DECEMBER 31, 2021, IAA HAS DOCUMENTED ITS CONSIDERATION OF FASB ASC 740-10, INCOME TAXES, THAT PROVIDES GUIDANCE FOR REPORTING UNCERTAINTY IN INCOME TAXES AND HAS DETERMINED THAT NO MATERIAL UNCERTAIN TAX POSITIONS QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. X X 0 0 0 0 0 0 0 0 0 SUZANNE ANTHONY CHIEF OPERATING OFFICER 146813 0 0 0 0 0 5389 0 1389 0 153591 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 BRIAN WALLACH AND SANDRA ABREVAYA HAVE A FAMILY RELATIONSHIP. BRIAN WALLACH AND SANDRA ABREVAYA HAVE A BUSINESS RELATIONSHIP WITH EDWIN COHEN. BRIAN WALLACH AND SANDRA ABREVAYA HAVE A BUSINESS RELATIONSHIP WITH DIVYA SILBERMANN. 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 DURING THE DECEMBER 2021 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 121,750. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 121,750. COMMUNICATION: PROGRAM SERVICE EXPENSES 441,331. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 200. TOTAL EXPENSES 441,531. CONSULTING: PROGRAM SERVICE EXPENSES 107,403. MANAGEMENT AND GENERAL EXPENSES 44,361. FUNDRAISING EXPENSES 14,365. TOTAL EXPENSES 166,129.