2024-12-13T16:01:23-06:00 2024-01-31 410746749 CLIFTONLARSONALLEN LLP 901 N GLEBE ROAD SUITE 200 ARLINGTON VA 22203 990 2023-02-01 133271855 AMYOTROPHIC LATERAL SCLEROSIS ASSN AMYO 2024078580 1300 WILSON BLVD 600 ARLINGTON VA 22209 GREGORY MITCHELL CHIEF FINANCIAL OFFICER 2024078580 2024-12-13 1 1 ROBERT WILLIAMS P01345960 5712279500 2024-12-13 2023 2024-10-15 13:58:12Z THE ALS ASSOCIATION CALANEET BALAS 1300 WILSON BLVD 600 ARLINGTON VA 22209 146211845 0 4119 X WWW.ALS.ORG X 1985 DE LEADING THE FIGHT TO CURE AND TREAT ALS THROUGH RESEARCH, ADVOCACY AND CARE SERVICES. 24 24 598 24 0 0 53676289 124090097 0 0 1771537 1597516 119782 762625 55567608 126450238 18722140 22892366 0 0 36210639 48337612 648986 724225 23391063 28618054 26885374 84199819 98839577 -28632211 27610661 94445022 127891549 30210557 29759323 64234465 98132226 X THE MISSION OF THE ALS ASSOCIATION IS TO DISCOVER TREATMENTS AND A CURE FOR ALS, AND TO SERVE, ADVOCATE FOR, AND EMPOWER PEOPLE AFFECTED BY ALS TO LIVE THEIR LIVES TO THE FULLEST. 1 0 35356917 9148304 0 PATIENT AND COMMUNITY SERVICES: THE ASSOCIATION 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. 15624022 13744062 0 RESEARCH PROGRAMS - THE ASSOCIATION FUNDS SCIENTIFIC RESEARCH GRANTS TO DOCTORS/SCIENTISTS TO FIND THE CAUSE AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS (ALS). 14953048 0 0 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, 2024, 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. IN ADDITION, THE ADVOCACY DEPARTMENT SECURED FUNDING FROM STATE GOVERNMENTS FOR CARE AND SUPPORT OF PEOPLE LIVING WITH ALS. 65933987 1 1 0 1 0 0 0 0 0 1 1 0 0 1 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 1 0 0 0 0 0 0 0 1 389 0 1 598 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 24 24 0 0 1 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 0 0 AK AL AR AZ CA CO CT DC DE FL GA HI IA ID IL IN KS KY LA MA MD ME MI MN MO MS MT NC ND NE NH NJ NM NV NY OH OK OR PA RI SC SD TN TX UT VA VT WA WV WY X X GREGORY MITCHELL 2024078580 1300 WILSON BLVD SUITE 600 ARLINGTON VA 22209 SCOTT KAUFFMAN CHAIR 5.00 X X 0 0 0 FRED M DEGRANDIS VICE-CHAIR 5.00 X X 0 0 0 SUE GORMAN IMMEDIATE PAST CHAIR (THRU 09/23) 5.00 X X 0 0 0 SANDRA PIERSOL SECRETARY 5.00 X X 0 0 0 MARK STANCIL TREASURER 5.00 X 0 0 0 CONNIE HOUSTON TRUSTEE 2.00 X X 0 0 0 JINSY ANDREWS TRUSTEE (THRU 09/23) 2.00 X 0 0 0 EUGENE BRANDON PHD TRUSTEE 2.00 X 0 0 0 DAVID VAN DE RIET TRUSTEE 2.00 X 0 0 0 CHRISTI L KOLARCIK PHD TRUSTEE 2.00 X 0 0 0 CHARLIE ROBINSON D SC PE TRUSTEE (THRU 03/23) 2.00 X 0 0 0 J THOMAS MAY TRUSTEE 2.00 X 0 0 0 JOHN P KRAVE JD TRUSTEE (THRU 03/23) 2.00 X 0 0 0 JUDY PRATT DMD TRUSTEE (THRU 03/23) 2.00 X 0 0 0 KENNETH MENKHAUS TRUSTEE (THRU 09/23) 2.00 X 0 0 0 LARRY FALIVENA TRUSTEE 2.00 X 0 0 0 LOU LIBBY MD TRUSTEE (THRU 03/23) 2.00 X 0 0 0 MARK CALMES TRUSTEE 2.00 X 0 0 0 MILLIE ARNOLD TRUSTEE (THRU 09/23) 2.00 X 0 0 0 NANCY LEAMOND TRUSTEE 2.00 X 0 0 0 PAUL INGHOLT TRUSTEE 2.00 X 0 0 0 TOM CARROLL TRUSTEE 2.00 X 0 0 0 WARREN NELSON TRUSTEE (THRU 09/23) 2.00 X 0 0 0 WENDY J SCHRIBER TRUSTEE (THRU 03/23) 2.00 X 0 0 0 MICHAEL BENATAR TRUSTEE 2.00 X 0 0 0 PETER MCKOWN TRUSTEE 2.00 X 0 0 0 REBECCA MOSS TRUSTEE 2.00 X 0 0 0 KENTON VAN HARTEN TRUSTEE 2.00 X 0 0 0 KEVIN SPINELLA TRUSTEE (THRU 03/23) 2.00 X 0 0 0 JOHN ROBINSON TRUSTEE 2.00 X 0 0 0 DOUGH BUTCHER TRUSTEE 2.00 X 0 0 0 WILLIAM SOFFELL TRUSTEE 2.00 X 0 0 0 CHRIS TONNIGES TRUSTEE 2.00 X 0 0 0 JESSE YBARRA TRUSTEE 2.00 X 0 0 0 BERNIE ZIPPRICH TRUSTEE 2.00 X 0 0 0 CALANEET BALAS PRESIDENT AND CEO 37.50 X 480990 0 48302 GREG MITCHELL CHIEF FINANCIAL OFFICER 37.50 X 290918 0 21803 TINA ZEFF CHIEF OPERATIONS OFFICER 37.50 X 396929 0 22599 NEIL THAKUR CHIEF MISSION OFFICER 37.50 X 252620 0 46212 DEAN FEENER CHIEF INFORMATION & MARKETING OFFICER 37.50 X 261683 0 17049 MONICA SANTA CRUZ CHIEF PEOPLE OFFICER 37.50 X 263468 0 20968 LANCE SLAUGHTER SVP STRATEGIC ALLIANCES AN 37.50 X 245541 0 40069 VICKIE LOBELLO SENIOR VICE PRESIDENT ORG CHANGE 37.50 X 234023 0 25796 BRIAN FREDERICK SENIOR VICE PRESIDENT STRATEGIC COMMUNICATIONS 37.50 X 232820 0 17755 KULDIP DAVE SENIOR VICE PRESIDENT RESE 37.50 X 234323 0 56502 KEITH GARY VICE PRESIDENT MISSION ACCELERATION 37.50 X 221069 0 39249 3114384 0 356304 103 0 1 0 BARNES & THORNBURG LLP 11 SOUTH MERIDIAN ST INDIANAPOLIS IN 46204 ATTORNEY (LEGAL SERVICES) 2644116 MCCORMICK GROUP 20 MAPLE ST LEXINGTON MA 02420 CONSULTING SERVICES 564568 LAUTMAN MASKA NEILL & COMPANY 1730 RHODE ISLAND AVE NW WASHINGTON DC 20036 FUNDRAISING COUNSEL 519308 VENABLE LLP PO BOX 62727 BALTIMORE MD 21264 CONSULTING SERVICES 312546 ATTAIN CONSULTING GROUP LLC 1650 TYSONS BLVD SUITE 1530 MCLEAN VA 22102 CONSULTING SERVICES 288958 18 1262462 13739099 4816275 104272261 874500 124090097 1736390 1736390 672836 672836 16591621 16721086 9409 -129465 -9409 -138874 -138874 3031112 13739099 3031112 0 MANAGEMENT FEE 900099 50000 50000 39789 39789 89789 126450238 0 0 2360141 15183912 15183912 4307653 4307653 3400801 3400801 2132923 679229 1222377 231317 37355453 22224997 3258561 11871895 2273914 1344026 202275 727613 3738362 2148965 372780 1216617 2836960 1665781 275875 895304 2887621 1482705 497324 907592 126934 2438 122969 1527 720081 720081 724225 724225 154351 154351 6162477 3950048 656057 1556372 608366 427687 983 179696 2743018 1639859 62209 1040950 4886126 2686853 631360 1567913 5200 5200 1977436 1139116 208504 629816 1596648 906940 197764 491944 911600 446108 238690 226802 72479 72479 2105204 688787 1061458 354959 280052 151722 33299 95031 TELECOMMUNICATIONS 526518 279833 49007 197678 CREDIT CARD FEES 520661 75472 26303 418886 600602 380974 169902 49726 98839577 65933987 9514527 23391063 X 2305000 329000 0 1976000 4617066 907434 732559 4912160 13399732 58562559 2928243 3083190 1909791 1622166 17053368 13983135 4598778 3070233 58740613 48852801 7518240 6881006 94445022 127891549 13447062 10766484 3462525 9152201 240955 1066957 3396470 9663545 8773681 30210557 29759323 X 52105755 12447847 12128710 85684379 64234465 98132226 94445022 127891549 X 27610661 2941544 3345556 X 0 1 X 1 0 X 34202008 33002036 37557524 53676289 124090097 282527954 34202008 33002036 37557524 53676289 124090097 282527954 49012886 233515068 2782381 1985828 2158934 1850075 2409226 11186444 57282 18824 21419 119699 3120901 3338125 297052523 146997 0.78610 0.93890 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2019 AMOUNT: $ 57,282. 2020 AMOUNT: $ 18,824. 2021 AMOUNT: $ 21,419. 2022 AMOUNT: $ 119,699. 2023 AMOUNT: $ 89,789. GROSS FUNDRAISING REVENUE - 2023 AMOUNT: $ 3,031,112. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 152636 995332 1147968 64786019 65933987 1000000 250000 0 147968 1 1000000 1000000 1000000 1000000 4000000 6000000 220698 177409 872335 1147968 2418410 250000 250000 250000 250000 1000000 1500000 7109 183829 152636 343574 700961 18056 485602 233415 6509730 -503564 5305205 700961 6516315 429109 435694 6509730 6516315 669572 669572 6516315 6454731 587974 526390 6516315 0.00000 1.00000 0.00000 0 0 1327429 364037 963392 1794589 1014592 779997 13931350 12604506 1326844 3070233 BENEFICIAL INTEREST IN PERPETUAL TRUSTS 823353 CONTRIBUTIONS RECEIVABLE FROM REMAINDER TRUSTS 79606 RIGHT OF USE ASSET 5978047 6881006 ANNUITY PAYMENT LIABILITY 927384 LEASE LIABILITIES - OPERATING 7846297 8773681 X 156003116 2941544 23551631 3214054 29707229 126295887 154351 154351 126450238 122105355 23551631 23551631 98553724 154351 131502 285853 98839577 PART V, LINE 4: EARNINGS FROM THE ENDOWMENT MUST 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, 2024 AND 2023. 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 59,676. CHANGE IN VALUE OF SPLIT-INTEREST AGREEMENTS -24,247. EXCESS FAIR VALUE OF ASSETS ACQUIRED 3,178,625. PART XII, LINE 4B - OTHER ADJUSTMENTS: UNUSED GRANTS 131,502. 1 EAST ASIA & THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION RESEARCH 410385 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION RESEARCH 664978 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION RESEARCH 2325438 0 0 0 0 0 0 3400801 0 3400801 EAST ASIA & PACIFIC SEED GRANTS PROGRAM 35385 WIRE TRANSFER 0 N/A N/A EAST ASIA & PACIFIC CLINICAL TRIAL AWARD 125000 WIRE TRANSFER 0 N/A N/A EAST ASIA & PACIFIC ASSISTIVE TECHNOLOGY 200000 WIRE TRANSFER 0 N/A N/A EAST ASIA & PACIFIC SEED GRANTS PROGRAM 50000 WIRE TRANSFER 0 N/A N/A EUROPE SEED GRANTS PROGRAM 49940 WIRE TRANSFER 0 N/A N/A EUROPE DRUG DEVELOPMENT CONTRACT 250000 WIRE TRANSFER 0 N/A N/A EUROPE PARTNERSHIP PROGRAM GRANT 75000 WIRE TRANSFER 0 N/A N/A EUROPE SEED GRANTS PROGRAM 49500 WIRE TRANSFER 0 N/A N/A EUROPE DRUG DEVELOPMENT CONTRACT 100000 WIRE TRANSFER 0 N/A N/A EUROPE PREVENTION PROGRAM 199276 WIRE TRANSFER 0 N/A N/A EUROPE CLINICAL TRIAL AWARD 500000 WIRE TRANSFER 0 N/A N/A EUROPE STRATEGIC INITIATIVE 25000 WIRE TRANSFER 0 N/A N/A EUROPE STRATEGIC INITIATIVE 200000 WIRE TRANSFER 0 N/A N/A EUROPE DRUG DEVELOPMENT CONTRACT 250000 WIRE TRANSFER 0 N/A N/A EUROPE ASSISTIVE TECHNOLOGY 200000 WIRE TRANSFER 0 N/A N/A EUROPE SEED GRANTS PROGRAM 46722 WIRE TRANSFER 0 N/A N/A EUROPE PARTNERSHIP PROGRAM GRANT 150000 WIRE TRANSFER 0 N/A N/A EUROPE ASSISTIVE TECHNOLOGY 200000 WIRE TRANSFER 0 N/A N/A EUROPE STRATEGIC INITIATIVE 30000 WIRE TRANSFER 0 N/A N/A NORTH AMERICA SEED GRANTS PROGRAM 50000 WIRE TRANSFER 0 N/A N/A NORTH AMERICA DRUG DEVELOPMENT CONTRACT 50000 WIRE TRANSFER 0 N/A N/A NORTH AMERICA PREVENTION PROGRAM 199332 WIRE TRANSFER 0 N/A N/A NORTH AMERICA CLINICAL TRIAL AWARD 165646 WIRE TRANSFER 0 N/A N/A NORTH AMERICA ASSISTIVE TECHNOLOGY 200000 WIRE TRANSFER 0 N/A N/A 24 0 0 0 0 0 0 0 PART I, LINE 2: GRANTS OUTSIDE OF THE UNITED STATES ARE FOR RESEARCH GRANTS. EACH AWARD HAS SPECIFIC MILESTONE REPORTING REQUIREMENTS AS WELL AS A FINAL REPORT THAT IS SUBMITTED UPON THE END OF THE GRANT PERIOD. THESE REPORTS SHOW THAT THE WORK BEING PERFORMED CONFORMS WITH THE PURPOSE OF THE GRANT AWARD AND THAT FUNDS ARE BEING SPENT APPROPRIATELY. X X X X X X X 1 LAUTMAN MASKA NEILL & COMPANY 1730 RHODE ISLAND AVE NW SUITE 301 WASHINGTON DC 20036 FUNDRAISING COUNSEL 0 4266237 519308 3746929 CREATIVE DIRECT RESPONSE INC 16900 SCIENCE DR SUITE 210 BOWIE MD 20715 FUNDRAISING COUNSEL 0 0 204917 -204917 4266237 724225 3542012 AL AK AZ AR CA CO CT DE DC 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 GREATER SAN DIEGO WALK 524854 484408 40446 10975 14061 2744 12666 WASHINGTON WALK 486885 441737 45148 3473 27671 1371 50 12583 4 15758472 12812954 2945518 240488 870814 329017 111477 1393722 16770211 13739099 3031112 254936 912546 333132 111527 1418971 3031112 0 SCHEDULE G, PART I, LINE 2B, COLUMN (V) THE ASSOCIATION RECEIVES ALL 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 ALABAMA NEUROLOGY ASSOCIATES 3105 INDEPENDENCE DR STE 105 BIRMINGHAM AL 35209 630976742 501(C)3 10000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 RECOGNIZED TREATMENT CENTER ALLEGHENY HEALTH NETWORK 490 E NORTH AVE STE 500 PITTSBURGH PA 15212 453674924 501(C)3 50000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH AMERICAN BRAIN FOUNDATION 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501(C)3 267000 0 N/A N/A SHELIA ESSEY AWARD; CLINICAL RESEARCH TRAINING FELLOWSHIP; CLINICAL SCIENTIST DEVELOPMENT AWARD; CRTS AQUILUS PHARMACEUTICALS INC 225 MYSTIC VALLEY PKWY WINCHESTER MA 01890 264765079 501(C)3 500000 0 N/A N/A CLINICAL TRIAL AWARD ATRIUM HEALTH FOUNDATION 208 EAST BOULEVARD CHARLOTTE NC 28203 566060481 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH AUGUSTA UNIVERSITY FOUNDATION INC 1120 15TH ST EMG LAB BP-4390 AUGUSTA GA 30912 586038134 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)3 350000 0 N/A N/A TRIAL CAPACITY PROGRAM; 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INVESTIGATOR INITIATED AWARD SINGLE YEAR UNIVERSITY OF PITTSBURGH 200 LOTHROP ST S547 BIOMEDICAL SCIENCE TWR PITTSBURGH PA 15213 250965591 501(C)3 50000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; ANNUAL CLINIC FUNDING - PA DOH FUND UNIVERSITY OF PUERTO RICO MEDICAL SCIENCES CAMPUS PO BOX 365067 SAN JUAN PR 00936 660433762 501(C)3 100000 0 N/A N/A TRIAL CAPACITY PROGRAM UNIVERSITY OF RHODE ISLAND 70 LOWER COLLEGE RD KINGSTON RI 02881 223011455 501(C)3 49281 0 N/A N/A SEED GRANTS PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR UNIVERSITY OF SOUTH FLORIDA FOUNDATION INC 4202 E FOWLER AVE ALC 100 FUND 25-0294 TAMPA FL 33620 590879015 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH UNIVERSITY OF SOUTHERN CALIFORNIA SPONSORED PROJECTS ACCOUNTING 3500 S FIGUEROA ST LOS ANGELES CA 90089 951642394 501(C)3 100000 0 N/A N/A DRUG DEVELOPMENT CONTRACT UNIVERSITY OF SOUTHERN CALIFORNIA 1520 SAN PABLO ST STE 3000 LOS ANGELES CA 90033 951642394 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH UNIVERSITY OF TENNESSEE MEDICAL CENTER 2121 MEDICAL CENTER PKWY SUITE 110 KNOXVILLE TN 37920 311626179 501(C)3 155000 0 N/A N/A ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN ANTONIO 7703 FLOYD CURL DR MSC 7883 SAN ANTONIO TX 78229 741586031 501(C)3 62000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH UNIVERSITY OF UTAH 201 S PRESIDENTS CIRCLE SALT LAKE CITY UT 84112 876000525 501(C)3 50000 0 N/A N/A SEED GRANTS PROGRAM UNIVERSITY OF UTAH 175 NORTH MEDICAL DR SALT LAKE CITY UT 84132 876000525 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH UNIVERSITY OF VIRGINIA RICHARD R DART ALS CLINIC PO BOX 37963 BOONE IA 22908 546001796 501(C)3 25000 0 N/A N/A QUARTERLY GRANT - MD DOH FUND UNMC PHYSICIANS DEPT OF NEUROLOGY 988145 NEBRASKA MEDICAL CTR OMAHA NE 68198 470049123 501(C)3 14000 0 N/A N/A MONTHLY GRANT UNIVERSITY OF VERMONT FOUNDATION 149 BEAUMONT AVE HSRF 426 BURLINGTON VT 05405 451556038 501(C)3 37500 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH VAN ANDEL RESEARCH INSTITUTE 333 BOSTWICK AVE NE GRAND RAPIDS MI 49503 522000823 501(C)3 50000 0 N/A N/A SEED GRANTS PROGRAM VANDERBILT UNIVERSITY MEDICAL CENTER 525 ROYAL PARKWAY NASHVILLE TN 37229 352528741 501(C)3 225000 0 N/A N/A ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT VETERANS HEALTH ADMINISTRATION 3495 BAILEY AVE BUFFALO NY 14215 161447141 501(C)3 10000 0 N/A N/A ANNUAL GRANT VIRGINIA MASON MEDICAL CENTER 1100 9TH AVE MAILSTOP X7-NEU SEATTLE WA 98101 910565539 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH WAKE FOREST UNIVERSITY HEALTH SCIENCES 1 MEDICAL CENTER BLVD WINSTONSALEM NC 27157 223849199 501(C)3 25000 0 N/A N/A ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH WASHINGTON UNIVERSITY PO BOX 505505 ST LOUIS MO 63150 430653611 501(C)3 13889 0 N/A N/A ANNUAL GRANT WASHINGTON UNIVERSITY IN ST LOUIS 700 ROSEDALE AVE ST LOUIS MO 63112 430653611 501(C)3 75000 0 N/A N/A POST DOCTORAL FELLOWSHIP WESTERN ALS RESEARCH GROUP INC 9452 MEDICAL CENTER DR STE 2W-108 LA JOLLA CA 92037 460711367 501(C)3 10000 0 N/A N/A STRATEGIC INITIATIVE 159 0 PATIENT GRANTS 6166 4241151 N/A N/A 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 REQUIRES PROGRESS REPORTS THROUGHOUT THE AWARD TO CONTINUE TO RECEIVE FUNDS. X X X X X 1 0 0 0 0 0 0 0 0 CALANEET BALAS PRESIDENT AND CEO 478420 0 0 0 2570 0 24398 0 23904 0 529292 0 0 0 TINA ZEFF CHIEF OPERATIONS OFFICER 110282 0 0 0 286647 0 8145 0 14454 0 419528 0 0 0 GREG MITCHELL CHIEF FINANCIAL OFFICER 288170 0 0 0 2748 0 20095 0 1708 0 312721 0 0 0 NEIL THAKUR CHIEF MISSION OFFICER 250002 0 0 0 2618 0 18141 0 28071 0 298832 0 0 0 KULDIP DAVE SENIOR VICE PRESIDENT RESE 232247 0 0 0 2076 0 17007 0 39495 0 290825 0 0 0 LANCE SLAUGHTER SVP STRATEGIC ALLIANCES AN 240696 0 0 0 4845 0 17637 0 22432 0 285610 0 0 0 MONICA SANTA CRUZ CHIEF PEOPLE OFFICER 259745 0 0 0 3723 0 18062 0 2906 0 284436 0 0 0 DEAN FEENER CHIEF INFORMATION & MARKETING OFFICE 257914 0 0 0 3769 0 13541 0 3508 0 278732 0 0 0 KEITH GARY VICE PRESIDENT MISSION ACCELERATION 216586 0 0 0 4483 0 16157 0 23092 0 260318 0 0 0 VICKIE LOBELLO SENIOR VICE PRESIDENT ORG CHANGE 229489 0 0 0 4534 0 13470 0 12326 0 259819 0 0 0 BRIAN FREDERICK SENIOR VICE PRESIDENT STRATEGIC COMM 230820 0 0 0 2000 0 16246 0 1509 0 250575 0 0 0 PART I, LINE 3 THE EXECUTIVE COMPENSATION COMMITTEE PERFORMS THE ANNUAL REVIEW OF THE PRESIDENT AND CEO AND DETERMINES THE SALARY AND/OR BONUSES USING INFORMATION OBTAINED FROM OUTSIDE SOURCES FOR SIMILAR SIZED ORGANIZATIONS. THIS IS REVIEWED AND COMPARED WITH MARKET DATA FROM ORGANIZATIONS OF A SIMILAR SIZE AND IN THE SAME INDUSTRY. THIS PROCESS RECENTLY TOOK PLACE IN 2023. PART I, LINE 4A TINA ZEFF, CHIEF OPERATIONS OFFICER, RECEIVED $285,000 IN SEVERANCE PAYMENT FOR HER SERVICES WITH THE ORGANIZATION. X 54 103895 NET PROCEEDS X 92 497163 AVG HIGH/LOW AT DATE X CRYPTO CURRENCY 11 273442 NET PROCEEDS 0 0 1 1 PART I, COLUMN (B): COLUMN B REPRESENTS THE NUMBER OF CONTRIBUTIONS PART I, LINE 32B: THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION USED THE SERVICES OF A CAR PROGRAM DONATION PROCESSOR SERVICE, ADVANCED REMARKETING SERVICES INC., TO ACCEPT, PROCESS, AND SELL NON-CASH DONATIONS OF AUTOMOBILES. THE ASSOCIATION USES THE SERVICES OF THE GIVING BLOCK TO ACCEPT, PROCESS AND SELL CRYPTO CURRENCY DONATIONS. THE ASSOCIATION USES BANK OF AMERICA MERRILL LYNCH TO ACCEPT, PROCESS AND SELL STOCK DONATIONS. FORM 990, PART III, LINE 2 THE ASSOCIATION COMPLETED A MERGER OF AFFILIATED CHAPTERS DURING THE YEAR ENDING JANUARY 31, 2024. AS OF JANUARY 31, 2023, THE ASSOCIATION HAD ASSUMED THE OPERATING ACTIVITY OF 17 OF ITS 34 AFFILIATED CHAPTERS. DURING THE YEAR ENDING JANUARY 31, 2024, 16 OF THE 17 CHAPTERS WHO PREVIOUSLY HAD THEIR OPERATIONS ASSUMED, ALONG WITH AN ADDITIONAL TWO CHAPTERS FINALIZED THEIR MERGER WITH THE ASSOCIATION. THE 18 MERGED CHAPTERS NO LONGER INDEPENDENTLY EXIST. ALL NET ASSETS OF THESE 18 MERGED CHAPTERS WERE REMITTED TO THE ASSOCIATION DURING THE YEAR ENDING JANUARY 31, 2024. FORM 990, PART VI, SECTION A, LINE 1A THE BOT SHALL ESTABLISH AND MAINTAIN THE FOLLOWING STANDING COMMITTEES: A) EXECUTIVE COMMITTEE; B) FINANCE COMMITTEE; C) AUDIT COMMITTEE; D) GOVERNANCE COMMITTEE; E) CEO COMPENSATION COMMITTEE. EACH STANDING COMMITTEE, EXCEPT THE EXECUTIVE COMMITTEE, SHALL BE AN ADVISORY COMMITTEE OF THE BOT AND THE MEMBERS OF EACH STANDING COMMITTEE, EXCEPT THE EXECUTIVE COMMITTEE, MAY OR MAY NOT BE TRUSTEES. THE MEMBERS OF THE EXECUTIVE COMMITTEE SHALL BE TRUSTEES. IN ADDITION TO THE STANDING COMMITTEES, THE BOT SHALL ESTABLISH AND MAINTAIN AT LEAST THREE MISSION COMMITTEES: CARE SERVICES, ADVOCACY AND RESEARCH. EACH MISSION COMMITTEE SHALL BE AN ADVISORY COMMITTEE OF THE BOT AND THE MEMBERS OF EACH MISSION COMMITTEE MAY OR MAY NOT BE TRUSTEES. FORM 990, PART VI, SECTION A, LINE 4 THE ALS ASSOCIATION'S BYLAWS WERE UPDATED IN SEPTEMBER 2023 AS PART OF A MERGER SETTLEMENT AGREEMENT. THE ALS ASSOCIATION'S BYLAWS AND ARTICLES OF INCORPORATION WERE UPDATED TO REFLECT THE MERGER. 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. AS OF JANUARY 31, 2024, THE BYLAWS HAVE BEEN AMENDED TO REMOVE STANDALONE CHAPTERS AS MEMBERS OF THE ORGANIZATION. FORM 990, PART VI, SECTION A, LINE 7A BOARD OF REPRESENTATIVES ELECTS THE MEMBERS OF THE BOARD OF TRUSTEES. BOT IS COMPOSED OF A REPRESENTATIVE FROM EACH MEMBER/CHAPTER. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS REVIEWED IN ITS ENTIRETY BY THE FINANCE COMMITTEE OF THE BOARD OF TRUSTEES AND ONCE ACCEPTED AND APPROVED, FULL RETURN IS PRESENTED TO ENTIRE BOARD OF TRUSTEES PRIOR TO THE SUBMISSION TO THE INTERNAL REVENUE SERVICE. 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 15A THE EXECUTIVE COMPENSATION COMMITTEE PERFORMS THE ANNUAL REVIEW OF THE PRESIDENT AND CEO AND DETERMINES SALARY AND/OR BONUSES USING INFORMATION OBTAINED FROM OUTSIDE SOURCES FOR SIMILAR SIZED ORGANIZATIONS. THIS IS REVIEWED AND COMPARED WITH MARKET DATA FROM ORGANIZATIONS OF A SIMILAR SIZE AND IN THE SAME INDUSTRY. THE PROCESS DESCRIBED HERE WAS LAST COMPLETED FOR THE FISCAL YEAR 01/31/24. THE PRESIDENT AND CEO REVIEWS ALL SENIOR LEVEL MANAGEMENT AND DETERMINES SALARY AND/OR BONUSES USING INFORMATION OBTAINED FROM OUTSIDE SOURCES FOR SIMILAR SIZED ORGANIZATIONS. THIS IS REVIEWED AND COMPARED WITH MARKET DATA FROM ORGANIZATIONS OF A SIMILAR SIZE AND IN THE SAME INDUSTRY. THE PROCESS DESCRIBED HERE WAS LAST COMPLETED IN 2024. 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 XI, LINE 9: CHANGE IN VALUE OF SPLIT-INTEREST AGREEMENTS -24,247. GAIN ON BENEFICIAL INTEREST IN PERPETUAL TRUSTS 59,676. EXCESS FAIR VALUE OF ASSETS ACQUIRED OVER LIABILITIES ASSUMED 3,178,625. UNUSED GRANTS 131,502.