2021-11-10T05:45:30-06:00 2021-06-30 871353108 EISNER ADVISORY GROUP LLC 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2020-07-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 2700 HORIZON DRIVE NO 120 KING OF PRUSSIA PA 19406 SUSAN L-J DICKINSON CHIEF EXECUTIVE OFFICER 2675147221 2021-11-08 1 SUSAN L-J DICKINSON 999009999 HELEN M MARTIN P01330899 2158818800 3 AAL1 IAL1 2020 2022-09-23 18:48:47Z SUSAN L-J DICKINSON 2700 HORIZON DRIVE NO 120 KING OF PRUSSIA PA 19406 33197203 0 X WWW.THEAFTD.ORG X 2002 PA PROMOTE AND FUND RESEARCH INTO DEVELOPING BETTER DIAGNOSTIC PROCESSES, THERAPIES, AND CURES FOR FRONTOTEMPORAL DEGENERATION (FTD); PROVIDE INFORMATION, EDUCATION, SUPPORT AND ADVOCACY TO PERSONS DIAGNOSED WITH FTD, THEIR FAMILIES AND CAREGIVERS; EDUCATE PHYSICIANS AND OTHER HEALTH PROFESSIONALS ABOUT FTD AND HOW TO IMPROVE PATIENT CARE; BRING ABOUT GREATER PUBLIC AWARENESS OF THE NATURE AND PREVALENCE OF FRONTOTEMPORAL DEGENERATION AND THE NEEDS OF THOSE WHO ARE COPING WITH IT; ADVOCATE WITH PUBLIC OFFICIALS TO PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY, LONG-TERM HEALTH CARE AND SOCIAL SERVICES. 18 18 31 364 0 0 9299005 28142577 99956 13363 90890 371351 -34737 0 9455114 28527291 3586237 3495976 0 0 2345570 2583721 65000 35000 822670 1726721 1500399 7723528 7615096 1731586 20912195 23888583 44786288 2961736 1900846 20926847 42885442 X PROMOTE AND FUND RESEARCH INTO DEVELOPING BETTER DIAGNOSTIC PROCESSES, THERAPIES, AND CURES FOR FRONTOTEMPORAL DEGENERATION (FTD); PROVIDE INFORMATION, EDUCATION, SUPPORT AND ADVOCACY TO PERSONS DIAGNOSED WITH FTD, THEIR FAMILIES AND CAREGIVERS; EDUCATE PHYSICIANS AND OTHER HEALTH PROFESSIONALS ABOUT FTD AND HOW TO IMPROVE PATIENT CARE; BRING ABOUT GREATER PUBLIC AWARENESS OF THE NATURE AND PREVALENCE OF FRONTOTEMPORAL DEGENERATION AND THE NEEDS OF THOSE WHO ARE COPING WITH IT; ADVOCATE WITH PUBLIC OFFICIALS AND PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY LONG-TERM HEALTH CARE AND SOCIAL SERVICES. 0 0 4162195 3393022 11543 RESEARCH - EACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSTICS AND THE FIRST THERAPEUTICS FOR FTD. TO THAT END, AFTD AWARDED MULTIPLE GRANTS DURING FY21, INCLUDING TWO PILOT GRANTS AND THREE HOLLOWAY POSTDOCTORAL FELLOWSHIPS.THROUGH THE TREATFTD PROGRAM, A $10 MILLION MULTI-YEAR PARTNERSHIP BETWEEN AFTD AND ADDF DESIGNED TO BRING BOTH NOVEL AND REPURPOSED TREATMENTS INTO CLINICAL TESTING, AWARDS TOTALING $2.5 MILLION WERE PROVIDED TO TWO INVESTIGATORS. THEIR INDIVIDUAL PROJECTS WILL TEST POTENTIAL DISEASE-MODIFYING THERAPIES THAT CAN BE USED IN THE TREATMENT OF FTD AND RELATED DEMENTIAS. THROUGH THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION WITH THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION, AFTD AWARDED A HARVARD MEDICAL SCHOOL RESEARCHER $572,678. THE RESEARCHER WILL LEAD HER TEAM IN DEVELOPING A BLOOD TEST TO MEASURE LEVELS OF TWO PROTEINS, CALLED TAU AND TDP-43, THAT CAN SIGNAL EARLY CHANGES IN THE BRAINS OF PEOPLE WHO WILL GO ON TO DEVELOP FTD. THE DIAGNOSTICS ACCELERATOR PROGRAM IS AN INITIATIVE DESIGNED TO ADVANCE THE SCIENCE OF BIOMARKERS THAT WILL ASSIST WITH DIAGNOSING AND TREATING ALZHEIMER'S DISEASE.AFTD DELIVERED THREE AWARDS TOTALING $600,000 THROUGH THE DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF. THE RECIPIENTS WILL STUDY THE EFFICACY OF COMPOUNDS THAT COULD PREVENT THE ACCUMULATION OF A PROTEIN LINKED TO FTD AND WORK ON DEVELOPING AN IMMUNOTHERAPY TREATMENT FOR THE MOST COMMON GENETIC MUTATION IN PEOPLE WITH FTD.IN MARCH, AFTD HOSTED AN EXTERNALLY LED PATIENT-FOCUSED DRUG DISCOVERY MEETING, GIVING PERSONS DIAGNOSED AND CURRENT AND FORMER CAREGIVERS A VALUABLE ONE-TIME OPPORTUNITY TO INFORM THE DEVELOPMENT OF FEDERAL REGULATORY PROCESSES FOR POTENTIAL FTD THERAPEUTICS. APPROXIMATELY 550 PEOPLE JOINED THE LIVESTREAM OF THE MEETING, WHICH WAS BROADCAST ENTIRELY ONLINE.AFTD AWARDED $150,000 TO THE FTD DISORDER REGISTRY, AN ELECTRONIC DATABASE THAT COLLECTS INFORMATION ABOUT THE FTD EXPERIENCE FROM PERSONS DIAGNOSED AND FTD CARE PARTNERS. THIS ESSENTIAL SOURCE OF FIRST-HAND ACCOUNTS WILL HELP INFORM RESEARCHERS AND CLINICIANS, AND WILL SPUR INNOVATION THAT WILL LEAD TO BETTER DIAGNOSES AND THERAPIES FOR PEOPLE LIVING WITH FTD. 1165367 102954 1820 EDUCATION AND SUPPORTSUPPORT - AFTD UNDERSTANDS THE CHALLENGES THAT FTD PRESENTS TO PATIENTS AND THEIR FAMILIES, AND WORKS HARD TO DEVELOP UNIQUE RESOURCES AND INFORMATION THAT WILL IMPROVE QUALITY OF LIFE FOR THOSE LIVING WITH FTD. AFTD STAFF RESPONDED TO 2,383 HELPLINE CALLS AND EMAILS. AS OF JUNE 30, 2021, THERE ARE 101 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 79 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 303 COMSTOCK GRANTS TO FTD CAREGIVERS AND PERSONS DIAGNOSED - A TOTAL THAT INCLUDES TRAVEL, RESPITE AND QUALITY OF LIFE GRANTS. EDUCATION AND INFORMATION-AFTD COLLABORATES WITH A GROWING NUMBER OF PARTNERS EACH YEAR TO EDUCATE HEALTHCARE PROFESSIONALS ABOUT FTD, WITH A GOAL OF SPEEDING OUR WAY TOWARD ACCURATE DIAGNOSIS AND EFFECTIVE DISEASE MANAGEMENT AND TREATMENT. AFTD'S 2021 EDUCATION CONFERENCE, WHICH WAS HELD ENTIRELY ONLINE, DREW MORE THAN 1,200 REGISTRANTS. THE CONFERENCE FEATURED EXPERTS FAMILIAR WITH FTD AND THE AFTD COMMUNITY TO COMPREHENSIVELY DISCUSS CONTENT PERTINENT TO PEOPLE LIVING WITH OR AFFECTED BY FTD, AS WELL AS HEALTHCARE PROFESSIONALS SEEKING GREATER UNDERSTANDING OF THIS DISEASE. AFTD ADDITIONALLY OFFERED SIX EXPERT-LED EDUCATIONAL WEBINARS, ATTRACTING 2,816 VIEWERS, AND THREE ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES. 1070856 ADVOCACY AND AWARENESS - OUR COMMUNITY IS LEADING THE WAY TO SEND THE MESSAGE THAT DEMENTIA IS A MULTI-FACETED DISEASE THAT CAN OCCUR AT A YOUNG AGE AND BEGIN WITH SYMPTOMS UNRELATED TO MEMORY. AFTD IS WORKING HARD TO ENSURE THAT THIS MESSAGE IS HEARD IN WASHINGTON DC AND OTHER SEATS OF POWER, WHERE DECISIONS ABOUT RESEARCH FUNDING AND SERVICES ARE MADE. 6398418 1 1 0 1 0 0 0 0 0 0 1 1 0 0 1 1 0 1 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 15 0 1 31 1 0 0 0 0 0 0 0 0 0 0 0 0 X 18 18 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AR CA CO CT DC FL GA HI IL KS KY ME MD MA MI MN MS OR PA RI SC TN NV NH NJ NM NY NC ND OH OK UT VA WA WV WI X X X CHRISTINE ROGERS STEVENS 2675147221 2700 HORIZON DRIVE STE 120 KING OF PRUSSIA PA 19406 SUSAN L-J DICKINSON CHIEF EXECUTIVE OFFICER 40.00 X 210961 0 14364 CHRISTINE ROGERS STEVENS CHIEF FINANCIAL OFFICER 40.00 X 141535 0 21849 SHARON DENNY SR DIRECTOR OF PROGRAMS 40.00 X 135054 0 4211 BENJAMIN FREEMAN DIR OF DEVELOPMENT & COMMUNICATIONS 40.00 X 130677 0 4098 DAVID PFEIFER CHAIR 10.00 X X 0 0 0 KIMBERLY PANG TORRES VICE CHAIR 4.00 X X 0 0 0 BRIAN ROSE TREASURER 4.00 X X 0 0 0 KACY KUNESH SECRETARY 4.00 X X 0 0 0 HELEN-ANN COMSTOCK DIRECTOR 3.00 X 0 0 0 CHRISTIAN BARROW DIRECTOR 3.00 X 0 0 0 RITA CHOULA DIRECTOR 2.00 X 0 0 0 RICK CHILDS DIRECTOR 3.00 X 0 0 0 SANDRA GROW DIRECTOR 3.00 X 0 0 0 MATTHEW HATFIELD DIRECTOR 2.00 X 0 0 0 DANIEL HEDAYA DIRECTOR 2.00 X 0 0 0 KRISTIN HOLLOWAY DIRECTOR 3.00 X 0 0 0 JARY LARSEN PHD DIRECTOR 3.00 X 0 0 0 JOSEPH MARQUEZ MD DIRECTOR 2.00 X 0 0 0 DONALD E NEWHOUSE DIRECTOR 2.00 X 0 0 0 KRISTIN SCHNEEMAN DIRECTOR 2.00 X 0 0 0 MICHAEL STOWELL PHD DIRECTOR 3.00 X 0 0 0 BETH WALTER DIRECTOR 3.00 X 0 0 0 618227 0 44522 4 0 1 0 0 42529 300500 27799548 2087608 28142577 FTD REGISTRY 541700 11543 11543 EDUC & AWARENESS PRODUCT SALES 900099 1820 1820 13363 271150 271150 4770113 4669912 100201 100201 100201 28527291 13363 0 371351 3393022 3393022 102954 102954 380753 206895 86929 86929 1813051 1377046 60595 375410 43748 33691 1057 9000 188364 141161 7523 39680 157805 114596 10081 33128 148101 82730 33523 31848 46888 600 46288 35000 35000 158137 138780 13680 5677 112860 112860 66642 32003 30001 4638 340183 250937 38907 50339 222403 140611 51661 30131 1820 1620 200 179276 179077 199 12145 7287 2429 2429 20037 12925 4342 2770 PRINTING AND COPYING 54803 27098 1387 26318 INDIRECT EVENT EXPENSES 37673 894 36779 BANK & CREDIT CARD FEES 30920 409 906 29605 POSTAGE 30241 16089 1429 12723 38270 25133 2871 10266 7615096 6398418 394008 822670 202487 111742 7496457 7161448 10894890 8762487 171 1517 34985 47744 55716 18217 49644 37499 5183886 18636308 10001480 26063 26063 23888583 44786288 109814 248287 1831754 1496196 640000 75934 300500 79668 80429 2961736 1900846 X 10244138 25758774 10682709 17126668 20926847 42885442 23888583 44786288 20912195 1077570 -31170 0 X X 0 1 X 1 0 X 4190242 5358325 8919063 9975434 8142577 36585641 4190242 5358325 8919063 9975434 8142577 36585641 13689721 22895920 2783 63330 179830 207149 271150 724242 37309883 604184 0.61370 0.62140 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2963 2963 7612133 7615096 530755 132689 0 0 380510 499092 536176 530755 1946533 2919800 6863 4515 3063 2963 17404 95128 124773 134044 132689 486634 729951 55716 18217 37499 37499 ISHARES ULTRA SHORT-TERM BOND ETF 5001480 F VANGUARD ULTRA-SHORT TERM BOND FUND 5000000 F 10001480 DEFERRED RENT 80429 80429 X PART X, LINE 2: THE INTERNAL REVENUE SERVICE HAS CLASSIFIED THE ORGANIZATION AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES RECOGNIZED IN AN ENTERPRISE'S FINANCIAL STATEMENTS. MANAGEMENT HAS ANALYZED THE TAX POSITIONS TAKEN BY THE ORGANIZATION, AND HAS CONCLUDED THAT AS OF JUNE 30, 2021, THERE ARE NO UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN THAT WOULD REQUIRE RECOGNITION OF A LIABILITY OR DISCLOSURE IN THE CONSOLIDATED FINANCIAL STATEMENTS. THE ORGANIZATION RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR THE YEAR ENDED JUNE 30, 2021. X 1 EVENT ASSOCIATES INC 162 W 56TH STREET SUITE 405 NEW YORK NY 10019 COORDINATION AND PLANNING OF VIRTUAL EVENT - "HOPE RISING" 0 1493502 35000 1458502 1493502 35000 1458502 AL AL AR CA CO CT DC FL GA IL KS ME MD MA MI MN MS OR PA RI SC TN NV NH NJ NM NY NC ND OH OK UT VA WA WV WI 1 ALZHEIMER'S DRUG DISCOVERY FOUNDATION 57 WEST 57TH STREET SUITE 904 NEW YORK NY 10019 201082179 501(C)(3) 1433333 DRUG DISCOVERY, TREAT FTD INITIATIVE AND DIAGNOSTIC ACCELERATOR THE FTD DISORDERS REGISTRY LLC 637 CAROLINA STREET SAN FRANCISCO CA 94107 473601782 501(C)(3) 150000 FTD PATIENT REGISTRY AMERICAN BRAIN FOUNDATION 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501(C)(3) 50000 CLINICAL RESEARCH TRAINING SCHOLARSHIP WITH THE AMERICAN ACADEMY OF NEUROLOGY TARGET ALS FOUNDATION INC PO BOX 1598 NEW YORK NY 10101 810756743 501(C)(3) 1250000 ALS AND FTD BIOMARKERS RESEARCH COLUMBIA UNIVERSITY MEDICAL CENTER 630 W 16TH STREET FLOOR 4 NEW YORK NY 10032 135598093 501(C)(3) 30000 FTD INSIGHTS FELLOWSHIP UNIVERSITY OF CALIFORNIA LOS ANGELES 10889 WILSHIRE BOULEVARD STE 700 LOS ANGELES CA 900951406 956006143 501(C)(3) 120000 AFTD POST DOCTORAL FELLOWSHIP - DANIEL OKOBI MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)(3) 120000 AFTD POST DOCTORAL FELLOWSHIP - MATTHEW NOLAN UNIVERSITY OF CALIFORNIA BERKLEY 1608 FOURTH STREET SUITE 220 BERKELEY CA 947105940 946002123 501(C)(3) 120000 AFTD POST DOCTORAL FELLOWSHIP - HIJAI REGINA SHIN OREGON HEALTH AND SCIENCE UNIVERSITY 3181 SW SAM JACKSON PARK ROAD PORTLAND OR 972393098 931176109 501(C)(3) 59689 AFTD PILOT GRANT - ALLISON LINDAUER MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)(3) 60000 AFTD PILOT GRANT - MARIA CATARINA SILVA 9 0 RESPITE CARE, TRAVEL AND QUALITY OF LIFE GRANTS 303 102954 PART I, LINE 2: RESEARCH GRANTS: GRANTEES SUBMIT INTERIM AND FINAL REPORTS WITH PROGRESS AND FINANCIAL INFORMATION. RESPITE AND TRAVEL GRANTS: GRANTEES SUBMIT A LISTING OF EXPENSES INCURRED AND PAYMENT IS MADE VIA REIMBURSEMENT. QUALITY OF LIFE GRANTS: GRANTEE EXPENDITURES ARE MONITORED THRU ON-LINE REPORTING. X X 0 0 0 0 0 0 0 0 0 SUSAN L-J DICKINSON CHIEF EXECUTIVE OFFICER 210961 0 0 0 0 0 6313 0 8051 0 225325 0 0 0 CHRISTINE ROGERS STEVENS CHIEF FINANCIAL OFFICER 141535 0 0 0 0 0 4234 0 17615 0 163384 0 0 0 X 10 2087608 HI/LOW DATE OF GIFT 0 1 0 FORM 990, PART VI, SECTION B, LINE 11B THE COMPLETE 990 WILL BE REVIEWED AND APPROVED BY AFTD'S AUDIT COMMITTEE AND PROVIDED TO THE FULL BOARD PRIOR TO SUBMISSION. FORM 990, PART VI, SECTION B, LINE 12C ALL BOARD MEMBERS AND CEO SIGN THE CONFLICT OF INTEREST FORM EVERY YEAR. IF AN ISSUE WERE TO ARISE IT WOULD BE ADDRESSED BY THE EXECUTIVE COMMITTEE AND THE BOARD MEMBER/CEO IN QUESTION. FORM 990, PART VI, SECTION B, LINE 15A THE PERFORMANCE REVIEW OF AFTD'S CEO WAS BASED ON THE PAST FISCAL YEAR RESULTS. IT INCLUDES INPUT THAT THE BOARD CHAIR AND VICE CHAIR OBTAINED FROM AFTD BOARD MEMBERS, AFTD STAFF AND MAJOR DONORS. THE PERFORMANCE REVIEW WAS WRITTEN BY THE CHAIR WITH INPUT FROM THE VICE CHAIR. BASED ON PERFORMANCE REVIEW AND FISCAL YEAR RESULTS, THE CHAIR RECOMMENDED A SALARY RANGE AND PROPOSED INCREASE WHICH WAS PUT FORWARD TO THE EXECUTIVE COMMITTEE FOR DISCUSSION AND ALIGNMENT. THE FINAL COMPENSATION WAS THEN APPROVED BY THE BOARD. THE SALARY RANGE AND ANNUAL INCREASE WAS DETERMINED AFTER REVIEWING SALARY COMPARABILITY DATA FOR NON PROFITS OF SIMILAR SIZE NATIONALLY AND IN THE GREATER PHILADELPHIA AREA ADJUSTED FOR COST OF LIVING INCREASES. FOR KEY EMPLOYEES, AFTD REVIEWS COMPARABILITY DATA AND DOCUMENTS SALARY RECOMMENDATIONS. FORM 990, PART VI, SECTION C, LINE 19 ALL GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST FROM THE OFFICE. FORM 990, PART XII, LINE 2C THE AUDIT COMMITTEE ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF THE INDEPENDENT ACCOUNTANT. THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. THE FTD DISORDERS REGISTRY LLC 2700 HORIZON DRIVE SUITE 120 KING OF PRUSSIA PA 19406 473601782 PROVIDES PATIENT REGISTRY FOR THOSE AFFECTED BY FTD DE 501(C)(3) LINE 7 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0