2020-06-02T08:57:35-05:00 2019-12-31 521392008 GELMAN ROSENBERG & FREEDMAN 4550 MONTGOMERY AVE SUITE 800N BETHESDA MD 208142930 990 2019-01-01 832016277 I AM ALS IAMA 2025051256 1200 PENNSYLVANIA AVE NW NO 1413 WASHINGTON DC 20044 DANIELLE CARNIVAL CHIEF EXECUTIVE OFFICER 2025051256 2020-06-02 1 RICHARD J LOCASTRO CPA P00288314 3019519090 75.103.231.202 2020-06-02 09:57:29 ED P 33DA4B33534C4D7C1853F02558DCFD93AEDB8771 7D98D07FA2D89BB842A260B78B6C37DE5C6222CA 2019 2021-01-29 14:40:06Z X DANIELLE CARNIVAL 1200 PENNSYLVANIA AVE NW NO 14135 WASHINGTON DC 20044 2591486 0 X WWW.IAMALS.ORG X 2018 IL SEE PART III, LINE 1. 11 10 4 10 0 0 2574735 0 16751 0 2591486 10000 0 234195 0 61123 683304 927499 1663987 925 1685514 20602 925 1664912 TO RAISE AWARENESS AS WELL AS SUPPORT, CARE AND FUNDING FOR AMYOTROPHIC LATERAL SCLEROSIS ("ALS") AND THE SEARCH FOR CURES FOR ALS. 0 0 181742 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. 286913 10000 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. 115184 INCREASE RESEARCH FUNDING AND SPEEDING OF CURES - BUILD A COLLABORATIVE 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. 583839 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 9 0 1 4 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 0 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 X X X DANIELLE CARNIVAL 2025051256 1200 PENNSYLVANIA AVE NW NO 14135 WASHINGTON DC 20044 LOUISE LANGHEIER CHAIR 15.00 X X 0 0 0 SANDRA ABREVAYA TREASURER 15.00 X X 0 0 0 JESSIE ROSSMAN SECRETARY 15.00 X X 0 0 0 BRIAN WALLACH CO-FOUNDER 40.00 X X 0 0 0 PETER BOWEN DIRECTOR 10.00 X 0 0 0 CLARE DURRETT DIRECTOR 4.00 X 0 0 0 EDWIN COHEN DIRECTOR 4.00 X 0 0 0 DANIEL TATE DIRECTOR 8.00 X 0 0 0 MICHAEL SLABY DIRECTOR (FROM 4/2019) 10.00 X 0 0 0 JANO CABRERA DIRECTOR 4.00 X 0 0 0 DANIELLE CARNIVAL CHIEF EXECUTIVE OFCR (FROM 9/2019) 50.00 X X 68181 0 331 68181 0 331 0 0 0 0 DO BIG THINGS 1412 JACKSON STREET SAN FRANCISCO CA 94109 WEBSITE DEVELOPMENT & MEDIA CONSULTANTS 119437 1 15000 2559735 2574735 16751 16751 2591486 0 0 16751 X 10000 10000 68512 41108 27404 133751 111099 22652 14752 12929 1823 17180 17180 27467 27467 5525 5525 440735 290472 150263 34711 34711 1389 1000 100 289 28802 14035 13779 988 2668 2668 21782 15994 4470 1318 29460 29460 4001 4001 ADMIN FEE (SEE SCH. O) 45036 45036 BOARD EXPENSES 29529 15225 10213 4091 FUNDRAISING 9501 100 9401 PAYROLL PROCESSING 2687 2281 406 11 11 927499 583839 282537 61123 102400 925 1583114 925 1685514 20602 0 20602 X 925 914514 750398 925 1664912 925 1685514 1663987 0 X 0 1 X 1 0 X 0 2574735 2574735 2574735 2574735 442680 2132055 0 16751 16751 2591486 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 5525 0 0 5525 0 PART II-B, LINE 1: ON A LIMITED NUMBER OF SPECIFIC LEGISLATIVE ISSUES, OUR VOLUNTEERS AND LEADERSHIP RAISED AWARENESS, MET WITH AND COMMUNICATED DIRECTLY WITH LEGISLATORS AND THEIR STAFF, WITH THE SUPPORT OF AN OUTSIDE CONTRACTOR. 0 X 4663126 2071640 2071640 2591486 0 2591486 2999139 2071640 2071640 927499 0 927499 PART X, LINE 2: FOR THE YEAR ENDED DECEMBER 31, 2019, 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. 1 NORTHEAST AMYOTROPHIC LATERAL SCLEROSIS CONSORTIUM 177 E COLORADO BOULEVARD SUITE 200 PASADENA CA 91105 562547779 501(C)(3) 10000 TWO-DAY PROGRAM HOSTED BY NEALS DEDICATED TO EDUATING PATIENTS AND FAMILIES ON CLINICAL RESEARCH AND HIGHLIGHTING OPPORTUNITIES FOR THEM TO HAVE A GREATER ROLE IN IT. 1 0 PART I, LINE 2: MEMBERS OF I AM ALS TEAM ATTENDED THE TWO DAY CONFERENCE FOR WHICH THE GRANT WAS GIVEN. I AM ALS WORKED WITH MEMBERS OF THE NEALS TEAM BEFORE AND DURING THE EVENT AND IS CONFIDENT THE FUNDS WERE USED APPROPRIATELY AND EFFECTIVELY FOR PATIENT EDUCATION. FORM 990, PART VI, SECTION A, LINE 2 BRIAN WALLACH AND SANDRA ABREVAYA HAVE A FAMILY RELATIONSHIP. BRIAN WALLACH AND EDWIN COHEN HAVE A BUSINESS 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 15A 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 LAST COMPENSATION REVIEW TOOK PLACE IN AUGUST 2019. 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 49,825. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 49,825. COMMUNICATION: PROGRAM SERVICE EXPENSES 59,511. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 59,511. DIGITAL: PROGRAM SERVICE EXPENSES 109,393. MANAGEMENT AND GENERAL EXPENSES 5,000. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 114,393. RECRUITING SERVICES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 90,168. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 90,168. OPERATION CONSULTING: PROGRAM SERVICE EXPENSES 24,937. MANAGEMENT AND GENERAL EXPENSES 54,369. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 79,306. RESEARCH: PROGRAM SERVICE EXPENSES 46,806. MANAGEMENT AND GENERAL EXPENSES 726. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 47,532. FORM 990, PART IX, LINE 24A: PRIOR TO RECEIVING ITS 501(C)(3) DESIGNATION, IAA ENTERED INTO A FISCAL SPONSORSHIP AGREEMENT WITH LES TURNER AMYTROPHIC LATERAL SCLEROSIS FOUNDATION, LTD (LES TURNER). DURING 2019, LES TURNER COLLECTED APPROXIMATELY $1,270,000 OF FUNDS ON BEHALF OF IAA AND CHARGED ADMINISTRATIVE FEES OF APPROXIMATELY $45,000.