2019-06-11T08:36:02-05:00 2019-01-31 410746749 CLIFTONLARSONALLEN LLP 901 N GLEBE ROAD SUITE 200 ARLINGTON VA 22203 990 2018-02-01 133271855 AMYOTROPHIC LATERAL SCLEROSIS ASSN AMYO 2024078580 1275 K STREET NW NO 250 WASHINGTON DC 20005 GREGORY MITCHELL EXEC VP, FINANCE & ADMIN 2024078580 2019-06-10 1 HEMALI PATEL P01337292 5712279500 67.137.57.251 2019-06-10 12:48:30 ED P A31B8943A14933A3BF1B290C164803F9A7DCE6A3 1938324BD4D887D076751857843371B82258E98C 2018 2019-02-21 02:37:17Z THE ALS ASSOCIATION CALANEET BALAS 1275 K STREET NW NO 250 WASHINGTON DC 20005 42732588 0 4119 X WWW.ALSA.ORG X 1985 DE LEADING THE FIGHT TO CURE AND TREAT ALS THROUGH RESEARCH, ADVOCACY AND CARE SERVICES. 23 23 106 23 0 30914 23216448 29429700 72600 146365 1546338 -2361210 -165651 -149153 24669735 27065702 22156243 17868141 0 0 7936521 8434709 290500 421000 4353885 7434947 8166363 37818211 34890213 -13148476 -7824511 99633005 96316713 3185115 5877998 96447890 90438715 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 15436780 14568338 RESEARCH PROGRAMS - THE ASSOCIATION FUNDS SCIENTIFIC RESEARCH GRANTS TO DOCTORS/SCIENTISTS TO FIND THE CAUSE AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS (ALS). DURING THE YEAR ENDING JANUARY 31, 2019, RESEARCH GRANTS WERE $14,568,338. THIS LEVEL OF SPENDING IS MADE POSSIBLE WITH FUNDING FROM THE ICE BUCKET CHALLENGE (IBC), AN ORGANIC FUNDRAISING EVENT THAT TOOK PLACE IN THE SUMMER OF 2014, THAT EMPOWERED INDIVIDUALS TO RAISE AWARENESS AND FUNDS FOR ALS BY POURING ICE WATER OVER THEIR HEADS, AND CHALLENGING THEIR FRIENDS TO DO THE SAME. THE ASSOCIATION WAS THE MAIN BENEFACTOR OF THIS EVENT AND RECEIVED APPROXIMATELY $115 MILLION IN CONTRIBUTIONS AS A RESULT. THE ASSOCIATION'S GOAL IS TO FURTHER INCREASE RESEARCH FUNDING IN ENSUING YEARS WITH THE GOAL OF SPENDING OVER $20 MILLION ANNUALLY ON RESEARCH. 9144294 3294823 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. WITH THE HELP OF IBC FUNDING, THE ASSOCIATION CONTINUES TO FUND GRANTS TO ITS CERTIFIED TREATMENT CENTERS OF EXCELLENCE. 3290965 4981 146365 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, 2019, 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. 27872039 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 65 0 106 1 0 0 0 0 0 1 1 0 0 0 1 0 0 0 X 23 23 0 0 0 0 0 0 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 1275 K STREET NW SUITE 250 WASHINGTON DC 20005 SUE GORMAN CHAIRMAN 5.00 X X 0 0 0 STEPHEN WINTHROP CHAIRMAN - UNTIL 12/18 5.00 X X 0 0 0 MARK STANCIL TREASURER 4.00 X X 0 0 0 CAMERON WARD SECRETARY 4.00 X X 0 0 0 MARK CALMES VICE-CHAIR 5.00 X X 0 0 0 TOM CARROLL TRUSTEE 2.00 X 0 0 0 DON CASEY TRUSTEE 2.00 X 0 0 0 FRED M DEGRANDIS TRUSTEE 2.00 X 0 0 0 MILLIE ARNOLD TRUSTEE 2.00 X 0 0 0 CONNIE HOUSTON TRUSTEE 2.00 X 0 0 0 SCOTT KAUFFMAN TRUSTEE 2.00 X 0 0 0 CHRISTI L KOLARCIK PHD TRUSTEE 2.00 X 0 0 0 JOHN P KRAVE JD TRUSTEE 2.00 X 0 0 0 LOU LIBBY MD TRUSTEE 2.00 X 0 0 0 WARREN NELSON TRUSTEE 2.00 X 0 0 0 STUART OBERMANN TRUSTEE 2.00 X 0 0 0 ELLYN C PHILLIPS TRUSTEE 2.00 X 0 0 0 JUDY PRATT DMD TRUSTEE 2.00 X 0 0 0 CHARLIE ROBINSON D SC PE TRUSTEE 2.00 X 0 0 0 WENDY J SCHRIBER TRUSTEE 2.00 X 0 0 0 WILLIAM D SOFFEL TRUSTEE 2.00 X 0 0 0 EUGENE BRANDON PHD TRUSTEE 2.00 X 0 0 0 WILLIAM THOET TRUSTEE 2.00 X 0 0 0 DOUG BUTCHER TRUSTEE 2.00 X 0 0 0 NANCY FRATES TRUSTEE - UNTIL 02/18 2.00 X 0 0 0 CALANEET BALAS PRESIDENT & CEO 37.50 X 300317 0 12394 GREG MITCHELL EVP, FINANCE & ADMINISTRATION 37.50 X 231748 0 11143 BRIAN FREDERICK EVP, COMMUNICATION 37.50 X 195041 0 10162 LANCE SLAUGHTER EVP, CHAPTER RELATIONS & GOVERNANCE 37.50 X 210684 0 13828 KIMBERLY HARDING-MAGINNIS SENIOR VP, CARE SERVICES 37.50 X 188046 0 11988 KATHLEEN SHEEHAN VP, PUBLIC POLICY & ADVOCACY 37.50 X 163398 0 14662 TINA ZEFF EVP, DEVELOPMENT 37.50 X 167968 0 19661 LYLES EDDINS VP, DEVELOPMENT 37.50 X 143772 0 5397 MONICA SANTA CRUZ VP, HUMAN RESOURCES & TALENT MANAGEMENT 37.50 X 143503 0 5483 TERESSA HARRIS VP, FINANCE 37.50 X 147838 0 16928 MARY BRUNEY VP, CHAPTER RELATIONS - UNTIL 08/18 37.50 X 140348 0 7859 NEIL THAKUR EVP, MISSION STRATEGY 37.50 X 124461 0 13136 2157124 0 142641 12 0 1 0 NNE MARKETING 1666 MASSACHUSETTS AVENUE SUITE 14 LEXINGTON MA 02420 DIRECT MARKETING SERVICES 366000 LUCIE BRUIJN PO BOX 670236 CHUGIAK AK 99567 SCIENTIFIC OFFICER RESEARCH OVERSITE 290000 DRUM - U MARKETING LLC 20 WEST 37TH STREET 3RD FLOOR NEW YORK NY 10018 MARKETING CONSULTING SERVICES 118750 THREESPOT MEDIA LLC 806 7TH STREET NW SUITE 201 WASHINGTON DC 20001 MARKETING CONSULTING SERVICES 113600 4 153834 1628674 379992 27267200 166286 29429700 CONFERENCE FEES 900099 146365 146365 146365 2641824 2641824 10458063 15461097 -5003034 -5003034 -5003034 0 1628674 205789 -205789 -205789 56636 56636 56636 27065702 146365 0 -2510363 X 16347937 16347937 33981 33981 1486223 1486223 2564616 1269496 938321 356799 4514722 2948395 545428 1020899 139248 88776 18957 31515 642189 480885 71641 89663 573934 359807 97670 116457 179371 17370 162001 41838 41838 421000 421000 203217 203217 3798384 2062257 94721 1641406 470042 417132 5263 47647 256498 140967 50388 65143 746603 487045 90301 169257 1920433 1429546 235858 255029 123475 77983 21843 23649 CREDIT CARD & DATA FEES 211046 75144 60003 75899 TELECOMMUNICATIONS 198884 149095 17797 31992 CHAPTER SUPPORT 22618 15088 7530 BAD DEBT EXPENSE -6046 -6046 34890213 27872039 2664289 4353885 X 5250358 6371727 520372 5692587 5417228 5984641 98291 190949 27479 127444 1031429 939369 126189 92060 84273526 73672514 3919562 4184791 99633005 96316713 2077642 2070215 174741 2818427 932732 989356 3185115 5877998 X 83168855 79882951 12271237 10555764 1007798 0 96447890 90438715 99633005 96316713 X -7824511 1809211 6125 X 0 1 X 1 0 X 137917563 23487328 27407957 23216448 29429700 241458996 137917563 23487328 27407957 23216448 29429700 241458996 734836 240724160 221293 1466148 2633793 2156702 2641824 9119760 29343 2042 47788 43647 56636 179456 250758212 596893 0.96000 0.96820 X 13778 439704 453482 34442628 34896110 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 546049 529987 466481 453482 1995999 250000 250000 250000 250000 1000000 1500000 48109 33626 15724 13778 111237 6516315 -61584 6454731 6516315 482577 482577 6516315 6333662 386180 203527 6516315 6516315 -182653 6333662 5990000 526315 313081 313081 6516315 0.03710 0.96290 0 0 146535 125862 20673 488592 419427 69165 396302 394080 2222 92060 ANNUITY PAYMENT LIABILITY 933628 DEFERRED RENT 55728 989356 X 34421917 1809211 5744096 6125 7559432 26862485 203217 203217 27065702 40431092 5744096 5744096 34686996 203217 203217 34890213 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 FOLLOWS THE ACCOUNTING STANDARD REGARDING THE RECOGNITION AND MEASUREMENT OF UNCERTAIN TAX POSITIONS. THE ASSOCIATION EVALUATED ITS TAX POSITIONS AND DETERMINED ITS POSITIONS ARE MORE-LIKELY-THAN-NOT TO BE SUSTAINED ON EXAMINATION. PART XI, LINE 2D - OTHER ADJUSTMENTS: GAIN ON BENEFICIAL INTEREST IN PERPETUAL TRUSTS -26,731. CHANGE IN VALUE OF SPLIT-INTEREST AGREEMENTS 32,856. 1 EUROPE 0 0 GRANTS RESEARCH 1140532 NORTH AMERICA 0 0 GRANTS RESEARCH 149903 SUB-SAHARAN AFRICA 0 0 GRANTS RESEARCH 15788 EAST ASIA & THE PACIFIC 0 0 GRANTS RESEARCH 130000 SOUTH AMERICA 0 0 GRANTS RESEARCH 50000 0 0 0 0 0 0 1486223 0 1486223 EUROPE CLINICAL MANAGEMENT 100000 CHECK & WIRE TRANSFER EUROPE CLINICAL PILOT TRIAL 435847 CHECK & WIRE TRANSFER EUROPE DRUG DEVELOPMENT CONTRACT 33333 CHECK & WIRE TRANSFER EUROPE INVESTIGATOR INITIATED PROGRAM 217500 CHECK & WIRE TRANSFER EUROPE LOU GEHRIG CHALLENGE ALS 165515 CHECK & WIRE TRANSFER EUROPE STRATEGIC INITIATIVE 188337 CHECK & WIRE TRANSFER EAST ASIA & THE PACIFIC INVESTIGATOR INITIATED PROGRAM 100000 CHECK & WIRE TRANSFER EAST ASIA & THE PACIFIC STRATEGIC INITIATIVE 30000 CHECK & WIRE TRANSFER NORTH AMERICA INVESTIGATOR INITIATED PROGRAM 100000 CHECK & WIRE TRANSFER NORTH AMERICA LOU GEHRIG CHALLENGE ALS 49903 CHECK & WIRE TRANSFER SUB-SAHARAN AFRICA INVESTIGATOR INITIATED PROGRAM 15788 CHECK & WIRE TRANSFER SOUTH AMERICA INVESTIGATOR INITIATED PROGRAM 25000 CHECK & WIRE TRANSFER SOUTH AMERICA POSTDOCTORAL FELLOWSHIP 25000 CHECK & WIRE TRANSFER 13 0 0 0 0 0 0 PART I, LINE 2: FOREIGN INVESTIGATORS, SIMILAR TO US INVESTIGATORS, 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. X X X X X X X 1 NNE MARKETING 105 PAUL REVERE ROAD CONCORD MA 07142 FUNDRAISING COUNSEL 0 2114921 366000 1748921 DRUM - U MARKETING LLC 1 E 22ND STREET SUITE 200 LOMBARD IL 60148 FUNDRAISING COUNSEL 0 1195036 55000 1140036 3309957 421000 2888957 CA AL AK AR CO DE DC FL GA HI KS KY LA ME MD MA MI MN MS NH NJ NM NV NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI NANA'S RUN 5K 275458 275458 170 204 192 DETROIT WALK TO DEFEAT 166638 166638 10626 150 8357 26 1186578 1186578 93809 1201 91080 1628674 1628674 104605 1555 99629 205789 -205789 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 ADVANTAGE HEALTH SAINT MARY'S MEDICAL GROUP 200 JEFFERSON AVENUE SE GRAND RAPIDS MI 49503 272491974 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT ALLEGHANY HEALTH NETWORK 320 E NORTH AVENUE PITTSBURGH PA 15212 251320493 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT AMERICAN ACADEMY OF NEUROLOGY INSTITUTE 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 410726167 501(C)3 53333 CLINICIAN SCIENTIST DEVELOPMENT AWARD AMERICAN ACADEMY OF NEUROLOGY INSTITUTE 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 410726167 501(C)3 80000 TREAT ALS CLINICAL SCIENTIST AMERICAN BRAIN FOUNDATION 201 CHICAGO AVENUE MINNEAPOLIS MN 55401 411717098 501(C)3 75000 CLINICAL RESEARCH TRAINING FELLOWSHIP AMERICAN BRAIN FOUNDATION 201 CHICAGO AVENUE MINNEAPOLIS MN 55401 411717098 501(C)3 50000 SHELIA ESSEY AWARD AMYLYX PHARMACEUTICALS INC 210 BROADWAY NO 201 CAMBRIDGE MA 02139 464600503 501(C)3 100000 LOU GEHRIG CHALLENGE ALSA INITIATED ANELIXIS THERAPEUTICS INC 300 TECHNOLOGY SQUARE 4TH FLOOR CAMBRIDGE MA 02139 474022454 501(C)3 624000 ALSA INITIATED APOTHECOM 800 TOWNSHIP LINE ROAD SUITE 300 YARDLEY PA 19067 264510763 501(C)3 23668 ALS PATIENT SURVEY BALL STATE UNIVERSITY 2000 W UNIVERSITY AVENUE IN 47304 MUNCIE IN 47304 356000221 501(C)3 25000 INVESTIGATOR INITIATED AWARD MULTI-YEAR BAYLOR 6550 FANNIN SUITE 1801 HOUSTON TX 77030 741613878 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT BOARD OF REGENTS OF UNIVERSITY OF WISCONSIN SYSTEM PO BOX 340 MILWAUKEE WI 53201 391805963 501(C)3 50000 CLINICAL MANAGEMENT AWARD BOARD OF REGENTS OF UNIVERSITY OF WISCONSIN SYSTEM PO BOX 500 UNIVERSITY OF WISCONSIN MILWAUKEE WI 53201 391805963 501(C)3 47156 YOUTH EDUCATIONAL MATERIALS BRIGHAM & WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)3 50000 STRATEGIC INITIATIVE CEDARS SINAI MEDICAL CENTER C/O MANAGER GRANT FUND ACCTNG 8700 BEVERLY BLVD 6500 WIL 11504720-5940 LOS ANGELES CA 90048 951644600 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT CEDARS-SINAI MEDICAL CENTER 6500 WILSHIRE BLVD SUITE 1150 LOS ANGELES CA 90048 951644600 501(C)3 70400 LOU GEHRIG CHALLENGE ALSA INITIATED CEDARS-SINAI MEDICAL CENTER 6500 WILSHIRE BLVD SUITE 1150 LOS ANGELES CA 90048 951644600 501(C)3 500000 STRATEGIC INITIATIVE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE CLEVELAND OH 44195 340714585 501(C)3 64769 INVESTIGATOR INITIATED AWARD MULTI-YEAR CLEVELAND CLINIC FOUNDATION NEUROMUSCULAR CENTER 9500 EUCLID AVE S90 CLEVELAND OH 44195 340714585 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT CLEVELAND VA RESEARCH FOUNDATION 10701 EAST BLVD CLEVELAND OH 44106 341710663 501(C)3 19440 CLINICAL MANAGEMENT COMMUNITY FOUNDATION OF GREATER HUNTSVILLE PO BOX 332 HUNTSVILLE AL 35804 263750673 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT DARTMOUTH HITCHCOCK FOUNDATION LEBANON CLINIC ONE MEDICAL CENTER DRIVE LEBANON NH 037560001 020222139 501(C)3 37500 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT DARTMOUTH-HITCHCOCK CLINIC 1 MEDICAL CENTER DRIVE LEBANON NH 037560001 222519596 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI-YEAR DIGNITY HEALTH - ST JOSEPHS HOSPITAL AZ 350 WEST THOMAS ROAD PHOENIX AZ 85013 860096787 501(C)3 40000 INVESTIGATOR INITIATED STARTER DIGNITY HEALTH - ST JOSEPHS HOSPITAL AZ 350 WEST THOMAS ROAD PHOENIX AZ 85013 860096787 501(C)3 85874 TREAT ALS DIGNITY HEALTH DBA ST JOSEPH'S HOSPITAL AND MEDICAL CTR DIGNITY HEALTH ST JOSEPHS HOSPITAL AZ ATTN MISC A/R CASH FILE 57431 LOS ANGELES CA 900748781 941196203 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT DREXEL UNIVERSITY TD BANK P O BOX 95000-1090 PHILADELPHIA PA 19195 231352630 501(C)3 40000 INVESTIGATOR INITIATED STARTER DUKE UNIVERSITY DEPT OF NEUROLOGY ATTN MEGAN PHILLIPS DUMC BOX 2900 DURHAM NC 27710 560532129 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT FACULTY PHYSICIANS AND SURGEONS OF LLUSM C/O JEFFREY ROSENFELD PHD MD 11370 ANDERSON STREET SUITE B-100 LOMA LINDA CA 92354 330672915 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT GEORGE WASHINGTON UNIVERSITY 2150 PENNSYLVANIA AVE NW 7-401 WASHINGTON DC 20037 542126575 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT GEORGIA HEALTH SCIENCES FOUNDATION INC ALS FUND 21078 1120 15TH STREET FL-1047 AUGUSTA GA 30912 352310573 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT GNS HEALTHCARE INC 196 BROADWAY CAMBRIDGE MA 021391902 271667187 501(C)3 281250 STRATEGIC INITIATIVE HENNEPIN HEALTHCARE FOUNDATION LSB-3 701 PARK AVE MINNEAPOLIS MN 55415 421707837 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT HENRY FORD HEALTH SYSTEM DEPARTMENT OF NEUROLOGY HOENSELAAR ALS CLINIC 2799 WEST GRAND BOULEVAR DETROIT MI 482022689 381357020 501(C)3 37933 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT HONOR HEALTH NEUROLOGY/ALS CLINIC 8125 N HAYDEN ROAD SCOTTSDALE AZ 85258 860181654 501(C)3 50000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT HOPE LOVES COMPANY INC C/O JODI ODONNELL-AMES P O BOX 931 PENNINGTON NJ 08534 208418402 501(C)3 50000 CAMP OUTREACH GRANT HOSPITAL FOR SPECIAL CARE ATTN FISCAL DEPT 2150 CORBIN AVE NEW BRITAIN CT 06053 060646766 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT HOSPITAL FOR SPECIAL SURGERY DEPARTMENT OF NEUROLOGY 535 EAST 70TH ST NEW YORK NY 10021 131624135 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT HOUSTON METHODIST DEPT OF NEUROLOGY ATTN MARY LOUISE SPEARS 6560 FANNIN STREET SUITE 802 HOUSTON TX 77030 760094743 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT INDIANA UNIVERSITY ATTN MARGARET GRABER 355 W 16TH STREET INDIANAPOLIS IN 46202 356001673 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT INNOCENTIVE INC 265 WINTER STREET 2ND FLOOR WALTHAM MA 02451 203437526 501(C)3 10250 STRATEGIC CHALLENGE TARGET IDENTIFICATION IZUMI BIOSCIENCES INC 23 BLUEBERRY LANE SUITE 100 LEXINGTON MA 02420 472572265 501(C)3 50000 DRUG DEVELOPMENT CONTRACT JEFFERSON WEINBERG ALS CENTER 900 WALNUT STREET JHN SUITE 408- FARBER INSTITUTE FOR NEUROLOGY PHILADELPHIA PA 19107 232809585 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT KU ENDOWMENT ASSOCIATION 3901 RAINBOW BLVD KANSAS CITY KS 66160 480547734 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT LAHEY CLINIC INC DBA CURT & SHONDA SCHILLING ALS CLINIC DEPARTMENT OF NEUROLOGY 41 MALL ROAD BURLINGTON MA 01805 042704683 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT LANKENAU INSTITUTE FOR MEDICAL RESEARCH 100 LANCASTER AVENUE WYNNEWOOD PA 19096 232175659 501(C)3 40000 INVESTIGATOR INITIATED STARTER LAUREN SCIENCES LLC 345 EAST 94TH STREET SUITE 18A NEW YORK NY 10128 273076076 501(C)3 75000 DRUG DEVELOPMENT CONTRACT LOUISIANA STATE UNIVERSITY HEALTH SCIENCES CENTER - NO 433 BOLIVAR STREET 8TH FLOOR NEW ORLEANS LA 70112 720702002 501(C)3 100000 INVESTIGATOR INITIATED AWARD MULTI-YEAR LUDWIG INSTITUTE FOR CANCER RESEARCH 8950 VILLA LA JOLLA DRIVE SUITE C135 LA JOLLA CA 92037 237121131 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI-YEAR LUDWIG INSTITUTE FOR CANCER RESEARCH 8950 VILLA LA JOLLA DRIVE SUITE C135 LA JOLLA CA 92037 237121131 501(C)3 530000 STRATEGIC INITIATIVE MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 205000 ALSA INITIATED MASSACHUSETTS GENERAL HOSPITAL THE GENERAL HOSPITAL CORP DBA MASSACHUSETTS GENERAL HOSPITAL BOSTON MA 02199 042697983 501(C)3 49407 CLINICAL MANAGEMENT MASSACHUSETTS GENERAL HOSPITAL BANK OF AMERICA NA BOSTON MA 022414876 042697983 501(C)3 50000 INVESTIGATOR INITIATED AWARD MULTI-YEAR MASSACHUSETTS GENERAL HOSPITAL BANK OF AMERICA NA BOSTON MA 02241 042697983 501(C)3 559697 LOU GEHRIG CHALLENGE ALSA INITIATED MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)3 75000 POSTDOCTORAL FELLOWSHIP MASSACHUSETTS GENERAL HOSPITAL MASS GENERAL HOSPITAL RESEARCH BANK OF AMERICA NA PO BOX 414876 BOSTON MA 022414876 042697983 501(C)3 208992 TREAT ALS MASSACHUSETTS INSTITUTE OF TECHNOLOGY 77 MASSACHUSETTS AVE ROOM NE49-3000 NE49-3000 CAMBRIDGE MA 02139 042103594 501(C)3 25000 INVESTIGATOR INITIATED AWARD MULTI-YEAR MAYO CLINIC 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT MAYO CLINIC - ALS CLINIC NEUROLOGY MAYO CLINIC - ALS CLINIC NEUROLOGY 13400 E SHEA BLVD SCOTTSDALE AZ 85259 860800150 501(C)3 50000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT MAYO CLINIC FLORIDA 4500 SAN PABLO ROAD S JACKSONVILLE FL 322241865 593337028 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)3 225000 INVESTIGATOR INITIATED AWARD MULTI-YEAR MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)3 130000 INVESTIGATOR INITIATED STARTER MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)3 25000 POSTDOCTORAL FELLOWSHIP MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)3 32500 STRATEGIC INITIATIVE MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)3 125000 TREAT ALS MEDICAL UNIVERSITY OF SOUTH CAROLINA OFFICE OF GRANTS CPNTRACTS ACCOUNTING 19 HAGOOD AVE SUITE 606 CHARLESTON SC 29403 576000722 501(C)3 25000 INVESTIGATOR INITIATED AWARD MULTI-YEAR MOUNT SINAI HEALTH SYSTEM MOUNT SINAI HEALTH SYSTEM OFFICE DEVELOPMENT ONE GUSTAVE L LEVY PLAC NEW YORK NY 10029 135564934 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT PO BOX 3006 ROCKVILLE MD 20847 501(C)3 25000 POSTDOCTORAL FELLOWSHIP NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS ATTN FINANCIAL MGMT BRANCH BETHESDA MD 208922540 520858115 501(C)3 600000 LOU GEHRIG CHALLENGE ALSA INITIATED NC STATE UNIVERSITY 2701 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EXCELLENCE GRANT VA PUGET SOUND HEALTH CARE SYSTEM ATTN VOLUNTARY 1660 SOUTH COLUMBIAN WAY SEATTLE WA 98108 741612229 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT VIRGINIA COMMONWEALTH UNIVERSITY GRANTS CONTRACTS ACCOUNTING RICHMOND VA 232843039 546001758 501(C)3 25000 INVESTIGATOR INITIATED STARTER VIRGINIA MASON MEDICAL CENTER ALS CLINIC NEUROLOGY AND NEUROPHYSIOLOGY 1100 9TH AVE PO BOX 900 M/S X7 NEU SEATTLE WA 98111 910565539 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT WAKE FOREST MEDICAL CENTER BLVD WINSTONSALEM NC 271571078 223849199 501(C)3 25000 CERTIFIED TREATMENT CENTER OF EXCELLENCE GRANT WASHINGTON UNIVERSITY IN ST LOUIS 700 ROSEDALE AVE CAMPUS BOX 1056 SAINT LOUIS MO 631121408 430653611 501(C)3 125000 ALSA INITIATED WASHINGTON UNIVERSITY IN ST LOUIS 700 ROSEDALE AVE CAMPUS BOX 1056 SAINT LOUIS MO 631121408 430653611 501(C)3 25000 INVESTIGATOR INITIATED AWARD MULTI-YEAR WASHINGTON UNIVERSITY IN ST LOUIS 700 ROSEDALE AVE CAMPUS BOX 1056 ST LOUIS MO 63112 430653611 501(C)3 25000 STRATEGIC INITIATIVE WEILL CORNELL MEDICAL 700 ROSEDALE AVE CAMPUS BOX 1056 SAINT LOUIS MO 631121408 133376695 501(C)3 -2268 INVESTIGATOR INITIATED STARTER YALE UNIVERSITY P O BOX 1873 NEW HAVEN CT 06508 060646973 501(C)3 49969 INVESTIGATOR INITIATED AWARD MULTI-YEAR YALE UNIVERSITY P O BOX 1873 NEW HAVEN CT 06508 060646973 501(C)3 50000 STRATEGIC INITIATIVE 221 0 DURABLE MEDICAL EQUIPMENT 15 28481 FMV POWER LIFT SEATS CARE SERVICES GRANTS 11 5500 CARE SERVICE GRANTS PART I, LINE 2: ALL GRANT AWARDED INVESTIGATORS 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. 1 X X X X X 0 0 0 1 0 1 0 0 0 CALANEET BALAS PRESIDENT & CEO 300317 0 0 0 0 0 8257 0 4137 0 312711 0 0 0 GREG MITCHELL EVP, FINANCE & ADMINISTRATION 231748 0 0 0 0 0 7042 0 4101 0 242891 0 0 0 BRIAN FREDERICK EVP, COMMUNICATION 195041 0 0 0 0 0 6074 0 4088 0 205203 0 0 0 LANCE SLAUGHTER EVP, CHAPTER RELATIONS & GOVERNANCE 210684 0 0 0 0 0 6589 0 7239 0 224512 0 0 0 KIMBERLY HARDING-MAGINNIS SENIOR VP, CARE SERVICES 188046 0 0 0 0 0 5735 0 6253 0 200034 0 0 0 KATHLEEN SHEEHAN VP, PUBLIC POLICY & ADVOCACY 163398 0 0 0 0 0 5155 0 9507 0 178060 0 0 0 TINA ZEFF EVP, DEVELOPMENT 167968 0 0 0 0 0 5825 0 13836 0 187629 0 0 0 TERESSA HARRIS VP, FINANCE 147838 0 0 0 0 0 4777 0 12151 0 164766 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 INCENTIVE BONUSES AWARDED TO CEO AND EVP'S, ACCRUED IN FY19 BUT PAID 5/1/19. PART I, LINE 6 INCENTIVE BONUSES AWARDED TO CEO AND EVP'S, ACCRUED IN FY19 BUT PAID 5/1/19. X 170 112848 FMV X 32 166286 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 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 PREPARER. 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 DIRECTORS. THEN, THE ENTITY WILL FILE THE FINAL COPY WITH THE IRS AND APPROPRIATE STATE AGENCIES. FORM 990, PART VI, SECTION B, LINE 12C EACH YEAR, EVERY BOARD MEMBER AND OFFICER OF THE ASSOCIATION MUST COMPLETE THE CONFLICT OF INTEREST POLICY FORM AND SUBMIT IT TO THE CHAIRMAN TO REVIEW AND MAKE ANY NECESSARY DECISIONS SHOULD A CONFLICT OF INTEREST ARISE. IF A CONFLICT IS DETERMINED TO EXIST, THE PERSON WHO HAS A POSSIBLE CONFLICT WILL EXPLAIN HIS OR HER POSITION TO THE GROUP, THEN LEAVE THE MEETING WHILE THE BOARD OR THE EXECUTIVE COMMITTEE DISCUSS THE SITUATION. THE BOARD/COMMITTEE WILL DETERMINE THE APPROPRIATENESS OF THE CONFLICT: IF IT IS AN ACCEPTABLE CONFLICT AS IS, OR IF IT IS ACCEPTABLE SUBJECT TO SPECIFIC CONDITIONS OF THE BOARD, OR IF IT IS NOT ACCEPTABLE AT ALL. THE BOARD WILL THEN COMMUNICATE THEIR FINDINGS TO THE INDIVIDUAL INVOLVED. 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, 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. THE COMPENSATION FOR OTHER KEY EMPLOYEES IS SET BY THE PRESIDENT AND REVIEWED AND APPROVED BY THE COMPENSATION COMMITTEE ANNUALLY. IN EACH CASE, THE REVIEW INCLUDES THE USE OF APPROPRIATE COMPARABILITY DATA. FORM 990, PART VI, SECTION C, LINE 19 THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION FORM 990'S, FINANCIAL STATEMENTS, CONFLICT OF INTEREST POLICY AND GOVERNING DOCUMENTS ARE AVAILABLE FOR REVIEW AT THE AGENCY'S 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, IT, OTHER CONSULTING: PROGRAM SERVICE EXPENSES 2,062,257. MANAGEMENT AND GENERAL EXPENSES 94,721. FUNDRAISING EXPENSES 1,641,406. TOTAL EXPENSES 3,798,384. FORM 990, PART XI, LINE 9: CHANGE IN SPLIT INTEREST AND PERPETUAL TRUSTS 6,125.