2021-06-15T13:52:10-05:00 2021-01-31 410746749 CLIFTONLARSONALLEN LLP 901 N GLEBE ROAD SUITE 200 ARLINGTON VA 22203 990 2020-02-01 133271855 AMYOTROPHIC LATERAL SCLEROSIS ASSN AMYO 2024078580 1300 WILSON BLVD NO 600 ARLINGTON VA 22209 GREGORY MITCHELL CHIEF FINANCIAL OFFICER 2024078580 2021-06-15 1 GREGORY MITCHELL XXX-XX-XXXX MICHAELA J CROMAR CPA P00895728 5712279500 2021-06-15 3 AAL1 IAL1 2020 2022-09-23 18:48:47Z THE ALS ASSOCIATION CALANEET BALAS 1300 WILSON BLVD NO 600 ARLINGTON VA 22209 49026377 0 4119 X WWW.ALS.ORG X 1985 DE LEADING THE FIGHT TO CURE AND TREAT ALS THROUGH RESEARCH, ADVOCACY AND CARE SERVICES. 24 24 123 31 0 0 34202008 33002036 112947 34050 2827122 2132313 -110273 -55882 37031804 35112517 19723207 13659140 0 0 10678002 12424475 890893 349450 7151837 10516401 12003131 41808503 38436196 -4776699 -3323679 98033652 100284898 7837360 7215213 90196292 93069685 X THE ALS ASSOCIATION LEADS THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL, CUTTING-EDGE RESEARCH AND TO EMPOWER PEOPLE WITH AMYOTROPHIC LATERAL SCLEROSIS AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT. 0 0 12483281 10955765 RESEARCH PROGRAMS - THE ASSOCIATION FUNDS SCIENTIFIC RESEARCH GRANTS TO DOCTORS/SCIENTISTS TO FIND THE CAUSE AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS (ALS). 11512369 2703122 PATIENT AND COMMUNITY SERVICES: THE ASSOCIATION'S NATIONAL CARE SERVICES DEPARTMENT, IN WORKING WITH THE ASSOCIATION'S NETWORK OF CHAPTERS, IS COMMITTED TO PROVIDING FULLY DEVELOPED, MANAGED AND EVALUATED PROGRAMS AND SERVICES TO PEOPLE LIVING WITH ALS, FAMILIES, CAREGIVERS AND PROFESSIONALS ACROSS THE UNITED STATES. PROGRAMS INCORPORATE THE PERSPECTIVES FROM KEY STAKEHOLDERS INCLUDING PEOPLE LIVING WITH THE DISEASE, SUBJECT MATTER EXPERTS, CLINICAL BEST PRACTICE, CAREGIVERS, TECHNOLOGY, ACADEMICIANS AND RESEARCH. ACTIVITIES ADDRESS CURRENT NEEDS AND EXPLORE FUTURE SERVICES, CREATING A FOUNDATION FOR INNOVATIVE AND ADVANCED PROGRAM DEVELOPMENT BASED ON SPECIFIC COMMUNITY NEEDS AND KNOWLEDGE ADVANCEMENTS. SPECIFIC ACTIVITIES INCLUDE 1) DEVELOPING AND IMPLEMENTING CLINICAL AND PROFESSIONAL EDUCATION PROGRAMS BASED ON ONGOING NEEDS ASSESSMENTS AND BEST PRACTICE; 2) IMPLEMENTING CERTIFIED CARE CENTER CERTIFICATION AND RECERTIFICATION PROGRAMS BASED ON NATIONALLY-RECOGNIZED STANDARDS OF PRACTICE, INCLUDING GRANTS TO SUPPORT CENTERS OF EXCELLENCE; 3) DEVELOPING STRATEGIES AND ACTUALIZING PLANS TO DELIVER CARE THROUGH OTHER THAN CERTIFIED CENTERS; 4) PROVIDING CURRENT INFORMATION, RESOURCES AND REFERRALS TO THE COMMUNITIES WE SERVE; AND 5) DEVELOPING AND IMPLEMENTING COMPREHENSIVE, CONSISTENT PROGRAMS AND SERVICES THAT ADDRESS INDIVIDUAL, FAMILY, AND CAREGIVER NEEDS BASED ON 'BEST PRACTICE AND AVAILABLE RESOURCES. 4074358 253 34050 PUBLIC AND PROFESSIONAL EDUCATION: THE ASSOCIATION'S PUBLIC POLICY DEPARTMENT DEVELOPS AWARENESS AND UNDERSTANDING OF ALS AND THE WORK OF THE ASSOCIATION AMONG THE GENERAL PUBLIC, HEALTHCARE PROFESSIONALS, THE SCIENTIFIC COMMUNITY, AND ELECTED AND OTHER GOVERNMENT OFFICIALS. FOR THE YEAR ENDING JANUARY 31, 2021, THE ASSOCIATION WORKED WITH CONGRESS TO CONTINUE FUNDING FOR THE NATIONAL ALS REGISTRY AND THE ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE AS WELL AS FUNDING FOR ALS RESEARCH AT THE NATIONAL INSTITUTES OF HEALTH. 28070008 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 59 0 123 1 0 0 0 0 0 0 0 0 0 1 0 0 0 X 24 24 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 CA AL AK AR CO CT DE DC FL GA HI IL KS KY LA ME MD MA MI MN MS NH NJ NV NY NC ND OH OK OR PA RI SC TN UT WA WV WI NM X X GREGORY MITCHELL 2024078580 1300 WILSON BLVD NO 600 ARLINGTON VA 22209 CALANEET BALAS PRESIDENT AND CEO 50.00 X 354590 0 44614 GREG MITCHELL CHIEF FINANCIAL OFFICER 50.00 X 271938 0 29786 NEIL THAKUR CHIEF MISSION OFFICER 50.00 X 256502 0 38707 LANCE SLAUGHTER SVP STRATEGIC ALLIANCES AND GOVERNANCE 50.00 X 246111 0 40848 TINA ZEFF CHIEF OPERATIONS OFFICER 50.00 X 242183 0 40669 BRIAN FREDERICK SENIOR VICE PRESIDENT AND HEAD OF CREATIVE 50.00 X 227206 0 23592 KULDIP DAVE VICE PRESIDENT RESEARCH 50.00 X 205277 0 35692 KIMBERLY HARDING-MAGINNIS SENIOR VICE PRESIDENT CARE SERVICES 50.00 X 203688 0 28544 TERESSA HARRIS SENIOR VICE PRESIDENT FINANCE 50.00 X 183783 0 28469 SUE GORMAN CHAIRMAN 15.00 X X 0 0 0 CAMERON WARD SECRETARY 15.00 X X 0 0 0 MARK CALMES VICE-CHAIR 15.00 X X 0 0 0 CONNIE HOUSTON TREASURER 15.00 X X 0 0 0 SCOTT KAUFFMAN SECRETARY 15.00 X X 0 0 0 MARK STANCIL TRUSTEE 8.00 X 0 0 0 TOM CARROLL TRUSTEE 8.00 X 0 0 0 DON CASEY TRUSTEE 8.00 X 0 0 0 FRED M DEGRANDIS TRUSTEE 8.00 X 0 0 0 MILLIE ARNOLD TRUSTEE 8.00 X 0 0 0 CHRISTI L KOLARCIK PHD TRUSTEE 8.00 X 0 0 0 JOHN P KRAVE JD TRUSTEE 8.00 X 0 0 0 LOU LIBBY MD TRUSTEE 8.00 X 0 0 0 WARREN NELSON TRUSTEE 8.00 X 0 0 0 STUART OBERMANN TRUSTEE 8.00 X 0 0 0 KEITH A GARY PH D TRUSTEE 8.00 X 0 0 0 JUDY PRATT DMD TRUSTEE 8.00 X 0 0 0 CHARLIE ROBINSON D SC PE TRUSTEE 8.00 X 0 0 0 WENDY J SCHRIBER TRUSTEE 8.00 X 0 0 0 WILLIAM D SOFFEL TRUSTEE 8.00 X 0 0 0 EUGENE BRANDON PHD TRUSTEE 8.00 X 0 0 0 CLIFTON GOOCH MD TRUSTEE 8.00 X 0 0 0 DOUG BUTCHER TRUSTEE 8.00 X 0 0 0 TOBIN M KUCHARSKI TRUSTEE 8.00 X 0 0 0 J THOMAS MAY TRUSTEE 8.00 X 0 0 0 WILLIAM THOETT TRUSTEE 8.00 X 0 0 0 JINSY ANDREWS TRUSTEE 8.00 X 0 0 0 KEVIN SPINELLA TRUSTEE 8.00 X 0 0 0 KENNETH MENKHAUS TRUSTEE 8.00 X 0 0 0 LARRY FALIVENA TRUSTEE 8.00 X 0 0 0 DAVID VAN DE RIET TRUSTEE 8.00 X 0 0 0 2191278 0 310921 32 0 1 0 ATTAIN LLC 1600 TYSONS BLVD 1400 MCLEAN VA 22102 CRM SOFTWARE IMPLEMENTATION 2006004 SALESFORCE 415 MISSION ST 3RD FLOOR SAN FRANCISCO CA 95105 CRM SOFTWARE VENDOR 1072756 TURNKEY PROMOTIONS 3310 ROSEDALE AVE RICHMOND VA 23230 MARKETING CONSULTING SERVICES 1021512 BUGLE LLC 1814 1ST ST NW WASHINGTON DC 20001 COMMUNICATION CONSULTING SERVICES 330937 LAUTMAN MASKA NEILL & CO 1730 RHODE ISLAND AVE NW STE 301 WASHINGTON DC 20036 FUNDRAISING COUNSEL 255700 7 53328 1092362 398545 31457801 5874895 33002036 CONFERENCE FEES 900099 34050 34050 34050 1985828 1985828 13985239 400 13839154 0 146085 400 146485 146485 0 1092362 74706 -74706 -74706 18824 18824 18824 35112517 34050 0 2076431 X 12712232 12712232 78844 78844 868064 868064 1278989 857053 387145 34791 9081444 6300744 989471 1791229 477116 334739 41057 101320 734942 502117 95462 137363 851984 588579 111399 152006 375926 111822 264104 44011 44011 349450 349450 192701 192701 6777581 2541805 728238 3507538 332335 310069 1105 21161 207757 164066 15131 28560 591794 390400 58061 143333 579414 435479 90386 53549 161293 125801 22288 13204 1105513 615300 151987 338226 CHAPTER SUPPORT 860830 859377 953 500 CREDIT CARD & DATA FEES 322406 91538 102280 128588 TELECOMMUNICATIONS 217439 159875 17570 39994 DUES AND SUBSCRIPTIONS 164386 95108 43695 25583 69745 38818 9589 21338 38436196 28070008 3214351 7151837 X 1708000 305000 0 1403000 2899434 5348756 2185573 821786 5138931 4677732 196562 203455 570021 1300138 6569698 1550154 157666 5019544 79137064 78834650 7748401 4078837 98033652 100284898 4733477 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1041709 DEFERRED RENT 1516176 PAYCHECK PROTECTION PROGRAM LOAN 1613120 4171005 X 62723665 6122944 21606777 74128 27803849 34919816 192701 192701 35112517 59850272 21606777 21606777 38243495 192701 192701 38436196 PART V, LINE 4: EARNINGS FROM THE ENDOWMENT MUST BE USED TO SUPPORT RESEARCH ACTIVITIES. UPON EXPIRATION OF THE TERM ENDOWMENT, THE CORPUS MAY ALSO BE USED TO SUPPORT RESEARCH ACTIVITIES. PART X, LINE 2: THE ASSOCIATION DID NOT HAVE ANY UNRELATED TAXABLE INCOME FOR THE YEARS ENDED JANUARY 31, 2021 AND 2020. ACCORDINGLY, NO PROVISION FOR INCOME TAXES HAS BEEN PROVIDED IN THE FINANCIAL STATEMENTS. THE ASSOCIATION FOLLOWS THE ACCOUNTING STANDARD REGARDING THE RECOGNITION AND MEASUREMENT OF UNCERTAIN TAX POSITIONS. THE ASSOCIATION EVALUATED ITS TAX POSITIONS AND DETERMINED THAT ITS POSITIONS ARE MORE-LIKELY-THAN-NOT TO BE SUSTAINED ON EXAMINATION. THE ASSOCIATION'S TAX RETURNS ARE SUBJECT TO REVIEW AND EXAMINATION BY FEDERAL AND STATE AUTHORITIES. PART XI, LINE 2D - OTHER ADJUSTMENTS: GAIN ON BENEFICIAL INTEREST IN PERPETUAL TRUSTS 44,633. CHANGE IN VALUE OF SPLIT-INTEREST AGREEMENTS 29,495. 1 EUROPE 0 0 GRANTS RESEARCH 348460 NORTH AMERICA 0 0 GRANTS RESEARCH 175000 EAST ASIA & THE PACIFIC 0 0 GRANTS RESEARCH 220056 SOUTH AMERICA 0 0 GRANTS RESEARCH 124548 0 0 0 0 0 0 868064 0 868064 EAST ASIA AND THE PACIFIC DRUG DEVELOPMENT CONTRACT 245811 CHECK N/A N/A EAST ASIA AND THE PACIFIC INVESTIGATOR INTITIATED -50755 CHECK N N/A EAST ASIA AND THE PACIFIC STRATEGIC INITIATIVE 25000 CHECK N/A N/A EUROPE DRUG DEVELOPMENT CONTRACT 66667 CHECK N/A N/A EUROPE INVESTIGATOR INITIATED 190680 CHECK N/A N/A EUROPE LOU GEHRIG CHALLENGE -20000 CHECK N/A N/A EUROPE POST DOCTORAL FELLOWSHIP 75000 CHECK N/A N/A EUROPE STRATEGIC INTIATIVE 36113 CHECK N/A N/A NORTH AMERICA INVESTIGATOR INITIATED 150000 CHECK N/A N/A NORTH AMERICA POST DOCTORAL FELLOWSHIP 25000 CHECK N/A N/A SOUTH AMERICA STRATEGIC INITIATIVE 124548 CHECK N/A N/A 11 0 0 0 0 0 0 0 PART I, LINE 2: FOREIGN RESEARCHERS, SIMILAR TO U.S. RESEARCHERS, ARE REQUIRED TO PROVIDE A DETAILED REPORT OF THEIR EXPENDITURES AT THE TERMINATION OF THE GRANT. ANY UNEXPENDED FUNDS MUST BE RETURNED TO THE ORGANIZATION. IF ADJUSTMENTS ARE MADE TO THE BUDGET-TRANSFER OF FUNDS TO DIFFERENT CATEGORIES, THESE HAVE TO BE REQUESTED IN WRITING AND APPROVED BY OUR RESEARCH DEPARTMENT. PART III ACCOUNTING METHOD: X X X X X X X 1 LAUTMAN MASKA NEILL & COMPANY 1730 RHODE ISLAND AVENUE NW SUITE WASHINGTON DC 20036 FUNDRAISING COUNSEL 0 2880424 255700 2624724 DRUM - U MARKETING LLC 1 E 22ND STREET SUITE 200 LOMBARD IL 60148 FUNDRAISING COUNSEL 0 878091 93750 784341 3758515 349450 3409065 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY DC LOUISVILLE KY WALK 121682 121682 493 3500 8484 CONCORD NH WALK 101384 101384 612 2498 22 869296 869296 4540 10950 43629 1092362 1092362 5645 14450 54611 74706 -74706 SCHEDULE G, PART I, LINE 2B, COLUMN (V) THE ASSOCIATION RECEIVES ALL OR 100% OF THE PROCEEDS FROM OUR DIRECT MAIL APPEALS PROGRAM INCLUDING TELEMARKETING. HOWEVER, THE ASSOCIATION IS RESPONSIBLE TO PAY FOR ALL EXPENSES INCURRED IN THE IMPLEMENTATION AND PRODUCTION OF ALL THE DIRECT MAIL AND TELEMARKETING SOLICITATIONS. 1 ALS NEVERSURRENDER FOUNDATION 12669 W WARREN AVE LAKEWOOD CO 80228 474746935 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR AMERICAN BRAIN FOUNDATION ATTN ACCOUNTS RECEIVABLE 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501(C)3 50000 SHELIA ESSEY AWARD AMERICAN BRAIN FOUNDATION ATTN ACCOUNTS RECEIVABLE 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501(C)3 105000 CLINICAL RESEARCH TRAINING FELLOWSHIP AMERICAN BRAIN FOUNDATION ATTN ACCOUNTS RECEIVABLE 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501(C)3 112000 CLINICAL SCIENTIST DEVELOPMENT AWARD ANELIXIS THERAPEUTICS INC 300 TECHNOLOGY SQUARE 4TH FLOOR CAMBRIDGE MA 02139 474022454 501(C)3 120000 ALSA INITIATED AQUINNAH PHARMACEUTICALS INC ATTN GLENN LARSEN LABCENTRAL 700 MAIN ST CAMBRIDGE MA 02139 465070024 501(C)3 94343 CLINICAL MANAGEMENT BLOOM SCIENCE INC 11575 SORRENTO VALLEY ROAD SAN DIEGO CA 92121 824752586 501(C)3 100000 CLINICAL MANAGEMENT BRAINSTORM CELL THERAPEUTICS INC 1325 AVENUE OF THE AMERICAS 28TH FLOOR NEW YORK NY 10019 207273918 501(C)3 200000 STRATEGIC INITIATIVE CEDARS-SINAI MEDICAL CENTER SPONSORED RESEARCH FUNDS ADMINISTRA ION 6500 WILSHIRE BLVD SUITE 1150 LOS ANGELES CA 90048 951644600 501(C)3 39990 STRATEGIC INITIATIVE CLEVELAND CLINIC 6801 BRECKSVILLE RD SUITE 20 INDEPENDENCE OH 44131 340714585 501(C)3 -21765 INVESTIGATOR INITIATED AWARD MULTI YEAR DARTMOUTH-HITCHCOCK CLINIC ASHLEY YOUNG DIR RES FIN 1 MEDICAL CENTER DRIVE LEBANON NH 03756 222519596 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR DIGNITY HEALTH DBA ST JOSEPH'S HOSPITAL AND MEDICAL CTR 350 WEST THOMAS ROAD PHOENIX AZ 85013 941196203 501(C)3 257443 STRATEGIC INITIATIVE DREXEL UNIVERSITY 3201 ARCH ST SUITE 100 PHILADELPHIA PA 19104 231352630 501(C)3 -40000 CLINICAL MANAGEMENT EMORY UNIVERSITY 1599 CLIFTON ROAD NE 4TH FLOOR ATLANTA GA 30322 580566256 501(C)3 49996 INVESTIGATOR INITIATED AWARD MULTI YEAR EMORY UNIVERSITY 1599 CLIFTON ROAD NE 4TH FLOOR ATLANTA GA 30322 580566256 501(C)3 75000 POST DOCTORAL FELLOWSHIP GNS HEALTHCARE INC 196 BROADWAY CAMBRIDGE MA 021391902 271667187 501(C)3 93750 STRATEGIC INITIATIVE INMUNE BIO INC 1200 PROSPECT ST SUITE 525 LA JOLLA CA 92037 475205835 501(C)3 300000 CLINICAL MANAGEMENT JOHNS HOPKINS UNIVERSITY 855 N WOLFE ST 242 BALTIMORE MD 212051503 520595110 501(C)3 50000 POST DOCTORAL FELLOWSHIP JOHNS HOPKINS UNIVERSITY 855 N WOLFE ST 242 BALTIMORE MD 212051503 520595110 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR LOUISIANA STATE UNIVERSITY HEALTH SCIENCES CENTER - NO 433 BOLIVAR STREET 8TH FLOOR NEW ORLEANS LA 70112 720702002 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR LUDWIG INSTITUTE FOR CANCER RESEARCH 8950 VILLA LA JOLLA DR SUITE C135 LA JOLLA CA 92037 237121131 501(C)3 75000 POST DOCTORAL FELLOWSHIP LUDWIG INSTITUTE FOR CANCER RESEARCH 8950 VILLA LA JOLLA DR SUITE C135 LA JOLLA CA 92037 237121131 501(C)3 125000 DRUG DEVELOPMENT CONTRACT MASS GENERAL HOSPITAL- RESEARCH 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 500000 STRATEGIC INITIATIVE MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 20300 ALSA INITIATED MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 -102241 TREAT ALS CLINICAL SCIENTIST MASSACHUSETTS GENERAL HOSPITAL - RESEARCH ATTN NCRI NEALS 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI YEAR MASSACHUSETTS GENERAL HOSPITAL - RESEARCH ATTN NCRI NEALS 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 50000 POST DOCTORAL FELLOWSHIP MAYO CLINIC 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)3 100000 STRATEGIC INITIATIVE MAYO CLINIC JACKSONVILLE RESEARCH FINANCE PO BOX 860334 MINNEAPOLIS MN 554860334 593337028 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR MAYO CLINIC JACKSONVILLE RESEARCH FINANCE PO BOX 860334 MINNEAPOLIS MN 554860334 593337028 501(C)3 75000 POST DOCTORAL FELLOWSHIP NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT NICHD/NIH 6710 B ROCKLEDGE DR 1211C 1211C BETHESDA MD 208927970 501(C)3 25000 POST DOCTORAL FELLOWSHIP NEUROPORE THERAPIES INC 10835 ROAD TO THE CURE SAN DIEGO CA 92121 262922865 501(C)3 100000 CLINICAL MANAGEMENT NEW YORK GENOME CENTER ATTN KATHLEEN KEARNS 101 SIXTH AVENUE 7TH FLOOR NEW YORK NY 10013 800631734 501(C)3 1150000 STRATEGIC INITIATIVE NORTHEAST ALS CONSORTIUM (NEALS) 811 W 7TH ST FLOOR 12 LOS ANGELES CA 90017 562547779 501(C)3 157805 STRATEGIC INITIATIVE ORIGENT DATA SCIENCES INC 8245 BOONE BLVD SUITE 600 VIENNA VA 22182 383916182 501(C)3 116133 STRATEGIC INITIATIVE PARTNERS HEALTHCARE 101 HUNTINGTON AVE BOSTON MA 02199 264349357 501(C)3 -6218 TREAT ALS CLINICAL SCIENTIST PARTNERS HEALTHCARE 101 HUNTINGTON AVE BOSTON MA 02199 264349357 501(C)3 -50537 STRATEGIC INITIATIVE PARTNERS HEALTHCARE 101 HUNTINGTON AVE BOSTON MA 02199 264349357 501(C)3 -45646 TREAT ALS CLINICAL SCIENTIST PISON TECHNOLOGY INC 258 HARVARD STREET STE 312 BROOKLINE MA 02199 813603539 501(C)3 100000 MANAGING ALS PRESIDENT AND FELLOWS OF HARVARD COLLEGE 1033 MASSACHUSETTS AVE 5TH FLOOR CAMBRIDGE MA 021385319 042103580 501(C)3 100000 MANAGING ALS REGENTS OF THE UNIVERSITY OF MICHIGAN C/O BNY MELLON BOX 223131 PITTSBURGH PA 152512131 386006309 501(C)3 49970 INVESTIGATOR INITIATED AWARD MULTI YEAR ROCKEFELLER UNIVERSITY ATTN PETE MARTTINEN 1230 YORK AVENUE BOX 259A NEW YORK NY 10065 131624158 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI YEAR SAINT LOUIS UNIVERSITY OFFICE OF SPONSORED PROGRAMS ADMINISTRATION FUSZ MEMORIAL HALL 3 ST LOUIS MO 63108 430654872 501(C)3 25659 STRATEGIC INITIATIVE SCRIPPS FLORIDA 130 SCRIPPS WAY JUPITER FL 33458 330435954 501(C)3 25000 POST DOCTORAL FELLOWSHIP ST JUDE CHILDREN'S RESEARCH HOSPITAL PO BOX 1000 DEPT 949 MEMPHIS TN 381480949 620646012 501(C)3 167187 CLINICAL MANAGEMENT ST JUDE CHILDREN'S RESEARCH HOSPITAL JAY THAKAR 262 DANNY THOMAS PL MEMPHIS TN 381053678 620646012 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR STATE UNIVERSITY OF NEW YORK AT STONY BROOK WEST 5510 MELVILLE LIBRARY STONY BROOK NY 117943362 146013200 501(C)3 99998 MANAGING ALS SYRACUSE UNIVERSITY OFFICE OF SPONSORED PROGRAMS 211 LYMAN HALL SYRACUSE UNIVERSITY SYRACUSE NY 13244 150532081 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR TACONIC BIOSCIENCES INC 273 HOVER AVE GERMANTOWN NY 125265320 141381104 501(C)3 74306 STRATEGIC INITIATIVE TARGET ALS FOUNDATION 1740 BROADWAY 15TH FLOOR NEW YORK NY 10019 810756743 501(C)3 50000 STRATEGIC INITIATIVE TEMPLE UNIVERSITY LEWIS KATZ SCHOOL OF MEDICINE KRESGE HALL EAST ROOM 342 3440 N BR PHILADELPHIA PA 19140 231365971 501(C)3 40000 CLINICAL MANAGEMENT TEMPLE UNIVERSITY LEWIS KATZ SCHOOL OF MEDICINE KRESGE HALL EAST ROOM 342 3440 N BR PHILADELPHIA PA 19140 231365971 501(C)3 112259 CLINICAL MANAGEMENT TEMPLE UNIVERSITY OF THE COMMONWEALTH SYSTEM OF HIGHER EDU RESEARCH ACCOUNTING SERVICES P O BOX 824242 PHILADELPHIA PA 19182 231365971 501(C)3 25659 STRATEGIC INITIATIVE THE BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM 21 N PARK STREET SUITE 6401 MADISON WI 53715 396006492 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR THE BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM ON BEHALF OF U WISCONSIN-MILWAUKEE PO BOX 340 MILWAUKEE WI 530510340 391805963 501(C)3 28624 STRATEGIC INITIATIVE THE GENERAL HOSPITAL CORPORATION DBA MASSACHUSETTS GENERAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 49407 CLINICAL MANAGEMENT THE GENERAL HOSPITAL CORPORATION DBA MASSACHUSETTS GENERAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 1318456 STRATEGIC INITIATIVE THE GENERAL HOSPITAL CORPORATION DBA MASSACHUSETTS GENERAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 50000 POST DOCTORAL FELLOWSHIP THE JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE LINDA C CORK DVM PHD DEPARTMENT OF PATHOLOGY BALTIMORE MD 21205 520595110 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI YEAR THE JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE LINDA C CORK DVM PHD DEPARTMENT OF PATHOLOGY BALTIMORE MD 21205 520595110 501(C)3 25000 POST DOCTORAL FELLOWSHIP THE METHODIST HOSPITAL RESEARCH INSTITUTE OFFICE OF GRANTS AND CONTRACTS P O BOX 4805 HOUSTON TX 77210 870721923 501(C)3 380700 ALSA INITIATED THE OHIO STATE UNIVERSITY OFFICE OF SPONSORED PROGRAMS 1960 KENNY RD COLUMBUS OH 43210 316025986 501(C)3 75000 STRATEGIC INITIATIVE THE TRUSTEES OF COLUMBIA UNIVERSITY IN NYC 630 WEST 168TH STREET BOX 49 NEW YORK NY 100323702 135598093 501(C)3 205000 STRATEGIC INITIATIVE THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 630 WEST 168TH STREET ROOM 5-420 NEW YORK NY 100323702 135598093 501(C)3 150000 INVESTIGATOR INITIATED AWARD MULTI YEAR THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 630 W 168TH ST 49 NEW YORK NY 100323725 135598093 501(C)3 25000 POST DOCTORAL FELLOWSHIP THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 630 W 168TH ST 49 NEW YORK NY 100323725 135598093 501(C)3 100000 MANAGING ALS UNIVERSITY OF FLORIDA CONTRACTS GRANTS 33 TIGERT HALL PO BOX 113001 GAINESVILLE FL 32611 596002052 501(C)3 -535 INVESTIGATOR INITIATED AWARD UNIVERSITY OF FLORIDA CONTRACTS GRANTS 33 TIGERT HALL PO BOX 113001 GAINESVILLE FL 32611 596002052 501(C)3 -175 STRATEGIC INITIATIVE UNIVERSITY OF FLORIDA BOARD OF TRUSTEES CONTRACTS GRANTS 33 TIGERT HALL PO BOX 113001 GAINESVILLE FL 32611 596002052 501(C)3 25000 POST DOCTORAL FELLOWSHIP UNIVERSITY OF FLORIDA BOARD OF TRUSTEES CONTRACTS GRANTS 33 TIGERT HALL PO BOX 113001 GAINESVILLE FL 32611 596002052 501(C)3 44963 CLINICAL MANAGEMENT UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL OFFICE OF THE BURSAR 55 LAKE AVENUE NORTH WORCESTER MA 01655 043167352 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI YEAR UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL OFFICE OF THE BURSAR 55 LAKE AVENUE NORTH WORCESTER MA 01655 043167352 501(C)3 1229018 STRATEGIC INITIATIVE UNIVERSITY OF PITTSBURGH OFFICE OF RESEARCH 123 UNIVERSITY PLACE B21 PITTSBURGH PA 15213 250965591 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI YEAR UNIVERSITY OF RHODE ISLAND ATTN SPONSORED COST ACCOUNTING 70 LOWER COLLEGE RD KINGSTON RI 02881 223011455 501(C)3 51751 INVESTIGATOR INITIATED AWARD MULTI YEAR UNIVERSITY OF SOUTHERN CALIFORNIA 3720 S FLOWER ST 3RD FLOOR LOS ANGELES CA 90090 951642394 501(C)3 125000 CLINICAL MANAGEMENT WASHINGTON UNIVERSITY IN ST LOUIS 1 BROOKINGS DR CAMPUS BOX 1054 ST LOUIS MO 63130 430653611 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI YEAR WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY RESEARCH ACCT C/O MELISSA PARAY 575 LEXINGTON AVENUE 9TH FLOOR NEW YORK NY 10022 131623978 501(C)3 125000 CLINICAL MANAGEMENT HOPE LOVES COMPANY INC C/O JODI ODONNELL-AMES P O BOX 931 PENNINGTON NJ 08534 208418402 501(C)3 25000 CHILDREN'S CAMP OUTREACH GRANT 2020 JOE MARTIN ALS FOUNDATION 100 NORTH TRYON ST STE 3420 CHARLOTTE NC 28202 260163120 501(C)3 10000 JOE'S CAMP NC2020 OUTREACH GRANT MID COAST 123 MEDICAL CENTER DRIVE SUITE G450 G450 BRUNSWICK ME 04101 010215911 501(C)3 5460 SALARIES OF SOCIAL WORKER AND DIETICIAN NON-PROFIT PERSONNEL NETWORK 27600 NORTHWESTERN HIGHWAY SUITE 215 SOUTHFIELD MI 48034 383176192 501(C)3 19000 EXECUTIVE SEARCH FOR MI ED THE ALS ASSOCIATION-FLORIDA CHAPTER 3242 PARKSIDE CENTER CIRCLE TAMPA FL 336190907 943124732 501(C)3 245279 CHAPTER CARE SVCS EXPENSES THE ALS ASSOCIATION-INDIANA CHAPTER PO BOX 56023 INDIANAPOLIS IN 46256 353029321 501(C)3 12500 CLINIC EXPANSION INITATIVE THE ALS ASSOCIATION-LOUISIANAMISSISSIPPI CHAPTER 11725 INDUSTRIPLEX BLVD SUITE 3 BATON ROUGE LA 708095190 201742120 501(C)3 26477 CHAPTER CARE SVCS EXPENSES THE ALS ASSOCIATION-MASSACHUSETTS CHAPTER 685 CANTON STREET SUITE 103 NORWOOD MA 02026 043085718 501(C)3 100000 ASSISTIVE TECHNOLOGY REGIONAL OUTREACH GRANT THE ALS ASSOCIATION-OREGON & SW WASHINGTON CHAPTER 700 NE MULTNOMAH ST SUITE 210 PORTLAND OR 97232 680516066 501(C)3 24800 OUTREACH GRANT FOR PORTLAND VA ALS CENTER 87 0 QUALITY OF LIFE GRANT 153 77194 1650 FMV POWER SEAT ELEVATION PART I, LINE 2: GRANT APPLICATIONS ARE REVIEWED BY COMMITTEES AND STAFF FOR APPROVAL. ALL GRANT AWARDED RESEARCHERS ARE REQUIRED TO PROVIDE A DETAILED REPORT OF THEIR EXPENDITURES AT THE TERMINATION OF THE GRANT. ANY UNEXPENDED FUNDS MUST BE RETURNED TO THE ORGANIZATION. IF ADJUSTMENTS ARE MADE TO THE BUDGET-TRANSFER OF FUNDS TO DIFFERENT CATEGORIES, THESE HAVE TO BE REQUESTED IN WRITING TO OUR RESEARCH DEPARTMENT. THE ASSOCIATION ALSO REQUIRE PROGRESS REPORTS THROUGH OUT THE AWARD TO CONTINUE TO RECEIVE FUNDS. X X X X X 0 0 0 1 0 1 0 0 0 CALANEET BALAS PRESIDENT AND CEO 313340 0 41250 0 0 0 30344 0 14270 0 399204 0 0 0 GREG MITCHELL CHIEF FINANCIAL OFFICER 247637 0 24301 0 0 0 28206 0 1580 0 301724 0 0 0 NEIL THAKUR CHIEF MISSION OFFICER 231752 0 24750 0 0 0 24905 0 13802 0 295209 0 0 0 LANCE SLAUGHTER SVP STRATEGIC ALLIANCES AND GOVERNAN 225465 0 20646 0 0 0 26619 0 14229 0 286959 0 0 0 TINA ZEFF CHIEF OPERATIONS OFFICER 219413 0 22770 0 0 0 23554 0 17115 0 282852 0 0 0 BRIAN FREDERICK SENIOR VICE PRESIDENT AND HEAD OF CR 210291 0 16915 0 0 0 22097 0 1495 0 250798 0 0 0 KULDIP DAVE VICE PRESIDENT RESEARCH 205277 0 0 0 0 0 18577 0 17115 0 240969 0 0 0 KIMBERLY HARDING-MAGINNIS SENIOR VICE PRESIDENT CARE SERVICES 203688 0 0 0 0 0 20858 0 7686 0 232232 0 0 0 TERESSA HARRIS SENIOR VICE PRESIDENT FINANCE 180783 0 3000 0 0 0 14667 0 13802 0 212252 0 0 0 PART I, LINE 3 A COMPENSATION COMMITTEE ASSISTS THE BOARD IN FULFILLING ITS RESPONSIBILITY TO OVERSEE THE COMPENSATION AND BENEFITS TO ITS PRESIDENT, BY PROVIDING COMPARABLE DATA TO DETERMINE THE REASONABLENESS OF THE PRESIDENT'S SALARY. THE SALARY IS THEN REVIEWED BY THE BOARD OF DIRECTORS WITHOUT THE PARTICIPATION OF THE PRESIDENT. PART I, LINE 5 PAYMENTS FOR ACCRUED INCENTIVE BONUSES AND SPOT BONUSES. PART I, LINE 6 PAYMENTS FOR ACCRUED INCENTIVE BONUSES AND SPOT BONUSES. X 63 66951 NET PROCEEDS X 307 5807944 AVG HIGH/LOW AT DATE 0 1 1 PART I, LINE 32B: THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION USED THE SERVICES OF A CAR PROGRAM DONATION PROCESSOR SERVICE, AMERICA'S CAR DONATION CENTER, TO ACCEPT, PROCESS, AND SELL NON-CASH DONATIONS OF AUTOMOBILES. FORM 990, PART VI, SECTION A, LINE 1 THE EXECUTIVE COMMITTEE CAN BE MADE UP OF UP TO TEN BOARD MEMBERS, WHICH ARE USUALLY BOARD OFFICERS AND COMMITTEE CHAIRS. THIS COMMITTEE CAN MEET IN BETWEEN REGULARLY SCHEDULED BOARD OF TRUSTEE MEETINGS AND HAS THE POWERS OF THE BOARD OF TRUSTEES. ACTIONS TAKEN BY THE EXECUTIVE COMMITTEE ARE REPORTED TO THE FULL BOARD OF TRUSTEES AT THE NEXT REGULARLY SCHEDULED BOARD OF TRUSTEES MEETING. FORM 990, PART VI, SECTION A, LINE 6 MEMBERS. THE MEMBERS OF THE ASSOCIATION (THE "MEMBERS AND EACH, A "MEMBER") SHALL BE CHARTERED CHAPTERS OF THE ASSOCIATION (THE "CHAPTERS AND EACH, A "CHAPTER"). CHAPTERS WITHOUT A CHARTER OR OTHER ENTITIES OR ORGANIZATIONS MAY BE AFFILIATED WITH AND/OR MANAGED BY THE ASSOCIATION, BUT ARE NOT ENTITLED TO ALL OF THE RIGHTS OF CHAPTERS AS PROVIDED BY THESE BYLAWS AND THE CHAPTER CHARTER AGREEMENT. CHAPTERS SHALL BE ADMITTED TO MEMBERSHIP BY THE BOT BASED ON CRITERIA CONSISTENT WITH THESE BYLAWS AS ADOPTED BY THE BOT. FORM 990, PART VI, SECTION A, LINE 7A BOARD OF REPRESENTATIVES ELECTS THE MEMBERS OF THE BOARD OF TRUSTEES. BOR IS COMPOSED OF A REPRESENTATIVE FROM EACH MEMBER/CHAPTER. FORM 990, PART VI, SECTION B, LINE 11B THE CFO OF THE ASSOCIATION WILL REVIEW AND COMMENT ON A DRAFT OF THE RETURN. AFTER ANY CHANGES, A COPY OF THE 990 AND ITS SUPPORTING STATEMENTS WILL BE FORWARDED TO ALL MEMBERS OF THE FINANCE COMMITTEE. UPON RECEIPT, THE COMMITTEE WILL REVIEW THE TAX RETURN AND DISCUSS ANY QUESTIONS OR ISSUES WITH THE CFO. UPON SATISFACTION OF ANY ISSUES, THE FINAL COPY OF THE 990 AND ITS SUPPORTING STATEMENTS WILL BE FORWARDED TO ALL MEMBERS OF THE BOARD OF TRUSTEES. THEN, THE ENTITY WILL FILE THE FINAL COPY WITH THE IRS AND APPROPRIATE STATE AGENCIES. FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY BOARD MEMBERS SIGN A NEW CONFLICT OF INTEREST STATEMENT AS WELL AS ALL STAFF. MANAGEMENT TRACKS THE CONFLICT OF INTEREST STATEMENTS FOR ALL BOARD AND COMMITTEE MEMBERS AS WELL AS STAFF. WHERE IT IS DETERMINED THAT AN ACTUAL CONFLICT OF INTEREST EXITS, THE RESPONSIBLE PERSON HAVING THE CONFLICT OF INTEREST SHALL NOT BE COUNTED IN DETERMINING THE PRESENCE OF A QUORUM FOR PURPOSES OF THE VOTE ON THAT CONTRACT OR TRANSACTION. SUCH RESPONSIBLE PERSON MAY MAKE A STATEMENT OR PRESENTATION REGARDING THE MATTER OR RESPOND TO QUESTIONS, BUT SUCH RESPONSIBLE PERSON (I) SHALL NOT PARTICIPATE IN OR BE PERMITTED TO HEAR THE BOARD'S OR ASSOCIATION COMMITTEE'S DISCUSSION OF THE MATTER; (II) SHALL NOT ATTEMPT TO EXERT HIS OR HER PERSONAL INFLUENCE WITH RESPECT TO THE MATTER, EITHER AT OR OUTSIDE THE MEETING; (III) SHALL NOT VOTE ON THE CONTRACT OR TRANSACTION; AND (IV) SHALL NOT BE PRESENT IN THE MEETING ROOM WHEN THE VOTE IS TAKEN. FORM 990, PART VI, SECTION B, LINE 15 A COMPENSATION COMMITTEE ASSISTS THE BOARD IN FULFILLING ITS RESPONSIBILITY TO OVERSEE THE COMPENSATION AND BENEFITS TO ITS PRESIDENT/CEO, BY PROVIDING COMPARABLE DATA TO DETERMINE THE REASONABLENESS OF THE PRESIDENT/CEO'S SALARY. THE SALARY IS THEN REVIEWED BY THE BOARD OF TRUSTEES WITHOUT THE PARTICIPATION OF THE PRESIDENT/CEO. THIS PROCESS TAKES PLACE ANNUALLY. THE COMPENSATION FOR OTHER KEY EMPLOYEES IS SET BY THE PRESIDENT/CEO AND REVIEWED AND APPROVED BY THE COMPENSATION COMMITTEE ANNUALLY. IN EACH CASE, THE REVIEW INCLUDES THE USE OF APPROPRIATE COMPARABILITY DATA. THIS PROCESS TAKES PLACE ANNUALLY. FORM 990, PART VI, SECTION C, LINE 19 THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION'S FORM 990S, FINANCIAL STATEMENTS, CONFLICT OF INTEREST POLICY AND GOVERNING DOCUMENTS ARE AVAILABLE FOR REVIEW AT ITS OFFICE UPON WRITTEN REQUEST. FORM 990 AND THE FINANCIAL STATEMENTS ARE AVAILABLE ON ITS WEBSITE AS WELL. FORM 990, PART IX, LINE 11G TELECOMMUNICATIONS, PUBLIC POLICY, OTHER CONSULTING: PROGRAM SERVICE EXPENSES 2,541,805. MANAGEMENT AND GENERAL EXPENSES 728,238. FUNDRAISING EXPENSES 1,841,245. TOTAL EXPENSES 5,111,288. DIRECT MAIL: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 1,666,293. TOTAL EXPENSES 1,666,293. FORM 990, PART XI, LINE 9: GAIN ON BENEFICIAL INTEREST IN PERPETUAL TRUSTS 44,633. CHANGE IN VALUE OF SPLIT-INTEREST AGREEMENTS 29,495.