2020-09-30T07:39:12-05:00 2020-06-30 131639826 EISNERAMPER LLP 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2019-07-01 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 2020-09-28 1 HELEN M MARTIN P01330899 2158818800 69.176.103.132 2020-09-28 08:35:20 ED P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 0EDE4F5BE59FB99924CAAEE7408372872BC47088 2019 2021-01-29 14:40:06Z X SUSAN L-J DICKINSON 2700 HORIZON DRIVE NO 120 KING OF PRUSSIA PA 19406 10790392 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. 16 16 26 335 0 0 8919063 9299005 150345 99956 154086 90890 -81551 -34737 9141943 9455114 3603039 3586237 0 0 1974884 2345570 65000 65000 816959 1338911 1726721 6981834 7723528 2160109 1731586 21156373 23888583 2033467 2961736 19122906 20926847 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 4209208 3455466 97298 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 FY20, INCLUDING THREE PILOT GRANTS - ONE OF WHICH REPRESENTS $25,000 OF FOLLOW-ON FUNDING FOR A PREVIOUS RECIPIENT.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 $500,000 WERE PROVIDED TO TWO INVESTIGATORS. THEIR INDIVIDUAL PROJECTS WILL TEST POTENTIAL DISEASE-MODIFYING THERAPIES, ONE PHARMACOLOGICAL AND ONE NON-PHARMACOLOGICAL, THAT CAN BE USED IN THE TREATMENT OF FTD AND RELATED DEMENTIAS. AFTD RECENTLY JOINED WITH ADDF AND OTHER INVESTORS, SUCH AS THE GATES FOUNDATION AND JEFF BEZOS, IN THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION DESIGNED TO ADVANCE THE SCIENCE OF BIOMARKERS THAT WILL ASSIST WITH DIAGNOSING AND TREATING ALZHEIMER'S DISEASE, FTD AND RELATED DEMENTIAS. AFTD COMMITTED TO AN OVERALL INVESTMENT OF $2.5 MILLION TO THE MULTI-YEAR INITIATIVE, TO BE MATCHED BY THE DIAGNOSTICS ACCELERATOR INITIATIVE. AWARDS TO DATE TOTALING $1,666,000 WILL FUND TWO RESEARCH PROJECTS DESIGNED TO VALIDATE BIOMARKER TESTS TO DETERMINE OPTIMAL TREATMENT TIMES, AS WELL AS INFORM BETTER DIAGNOSTIC AND TREATMENT METRICS. IN A NEW STRATEGIC PARTNERSHIP, AFTD AND TARGET ALS ARE COMMITTING A TOTAL OF $5 MILLION FOR A MULTI-YEAR INITIATIVE TO FUND COLLABORATIVE RESEARCH PROJECTS THAT WILL BRING TOGETHER EXPERTS FROM THE BIOPHARMACEUTICAL INDUSTRY AND ACADEMIA TO DEVELOP DIAGNOSTIC TOOLS AND VALIDATE BIOMARKERS FOR POTENTIAL FTD TREATMENTS. IN THE FIRST YEAR OF THE INITIATIVE, WE COMMITTED TO PROVIDE MULTI-YEAR FUNDING TO SIX RESEARCH CONSORTIA INVESTIGATING MULTIPLE POTENTIAL FTD BIOMARKERS. IN 2019, AFTD AWARDED TWO RESEARCHERS FROM THE UNIVERSITY COLLEGE OF LONDON $1.1 MILLION FOR A 3-YEAR STUDY INVESTIGATING THE ROLE OF NEUROINFLAMMATION IN FTD TO DEVELOP A SURROGATE BIOMARKER THAT WILL HELP IMPROVE THE CHANCES OF EARLY DIAGNOSIS AND TO STUDY DISEASE PROGRESSION. THROUGH THE DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF, WE AWARDED FUNDING TO A RESEARCHER INVESTIGATING THE EFFICACY OF AN ANTIBODY INJECTION TO TREAT PROTEIN AGGREGRATION THAT LEADS TO NEURODEGENERATION.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. 1103988 130771 2658 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 2,546 HELPLINE CALLS AND EMAILS. WE EXPANDED OUR NETWORK OF AFFILIATED SUPPORT GROUPS; AS OF JUNE 30, 2020, THERE ARE 105 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 83 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 252 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. THERE WERE 634 UNIQUE PARTICIPANTS WHO JOINED THE 2020 AFTD EDUCATION CONFERENCE: WEBINAR SERIES, A VIRTUAL EVENT HOSTING ONE HOUR-LONG WEBINAR A WEEK, FOR FIVE WEEKS. THE EPISODES 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 TWO EXPERT-LED WEBINARS AND THREE ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES. AFTD ALSO PUBLISHED A NEW 48-PAGE BOOKLET TO ASSIST INDIVIDUALS IN NAVIGATING GRIEF BROUGHT ON BY A DIAGNOSIS OF FTD. 903598 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. 6216794 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 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 1 0 0 0 1 23 0 1 26 1 0 0 0 0 0 0 0 0 0 0 0 0 X 16 16 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 196500 0 13161 NADINE TATTON SCIENTIFIC DIRECTOR 40.00 X 156000 0 19419 CHRISTINE ROGERS STEVENS CHIEF FINANCIAL OFFICER 40.00 X 136875 0 21068 SHARON DENNY SR DIRECTOR OF PROGRAMS 40.00 X 130000 0 4077 BENJAMIN FREEMAN DIR OF DEVELOPMENT & COMMUNICATIONS 40.00 X 127562 0 4012 DAVID PFEIFER CHAIR (EFF 4/20) 10.00 X X 0 0 0 STEPHEN FENOGLIO VICE CHAIR (EFF 4/20) 3.00 X X 0 0 0 KIMBERLY PANG TORRES SECRETARY (EFF 4/20) 4.00 X X 0 0 0 BRIAN ROSE TREASURER 4.00 X X 0 0 0 HELEN-ANN COMSTOCK DIRECTOR 3.00 X 0 0 0 GAIL ANDERSEN DIRECTOR 10.00 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 (EFF 4/20) 2.00 X 0 0 0 KACY KUNESH DIRECTOR 3.00 X 0 0 0 JARY LARSEN PHD DIRECTOR 3.00 X 0 0 0 KATHY MELE DIRECTOR 3.00 X 0 0 0 MICHAEL STOWELL PHD DIRECTOR 3.00 X 0 0 0 BETH WALTER DIRECTOR 3.00 X 0 0 0 STEVE BELLWOAR DIRECTOR (THRU 4/20) 2.00 X 0 0 0 PAUL LESTER THRU 420 DIRECTOR 2.00 X 0 0 0 746937 0 61737 5 0 1 0 0 1951093 7347912 86420 9299005 FTD REGISTRY 541700 97298 97298 EDUC & AWARENESS PRODUCT SALES 900099 2658 2658 99956 207149 207149 1055032 1171291 -116259 -116259 -116259 129250 1951093 163987 -34737 -34737 9455114 99956 0 56153 2353333 2353333 130771 130771 1102133 1102133 322606 115737 157575 49294 1679802 1251425 158135 270242 37146 27676 981 8489 160561 116448 4965 39148 145455 96040 16630 32785 138783 16565 105912 16306 31728 31728 65000 65000 196939 163423 12569 20947 106796 106746 50 262452 173491 30061 58900 195500 136476 29779 29245 25261 22209 2667 385 143563 118604 24959 7897 5528 1185 1184 16864 12071 2333 2460 INDIRECT EVENT EXPENSES 215317 79504 135813 OFFICE & PROG SUPPLIES 190802 70011 101835 18956 PRINTING AND COPYING 86197 66990 2898 16309 POSTAGE 41435 17319 1956 22160 67187 34294 3607 29286 7723528 6216794 689775 816959 285925 202487 6743735 7496457 10012880 10894890 22148 171 114459 34985 55716 6072 1825 49644 3966729 5183886 8672 26063 21156373 23888583 130678 109814 1867789 1831754 35000 640000 300500 0 79668 2033467 2961736 X 7836018 10244138 11286888 10682709 19122906 20926847 21156373 23888583 1731586 92779 -20424 0 X X 0 1 X 1 0 X 2307371 4190242 5358325 8919063 9975434 30750435 2307371 4190242 5358325 8919063 9975434 30750435 11358934 19391501 2402 2783 63330 179830 207149 455494 31205929 714582 0.62140 0.69020 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3063 3063 7720464 7723527 536176 134044 0 0 423361 380510 499092 536176 1839139 2758709 2850 6863 4515 3063 17291 105840 95128 124773 134044 459785 689678 55716 6072 49644 49644 DEFERRED RENT 79668 79668 X 9661234 92779 133765 226544 9434690 20424 20424 9455114 7857293 133765 133765 7723528 0 7723528 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, 2020 AND 2019, THERE ARE NO UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN THAT WOULD REQUIRE RECOGNITION OF A LIABILITY OR DISCLOSURE IN THE FINANCIAL STATEMENTS. THE ORGANIZATION RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WAS NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR EITHER OF THE YEARS ENDED JUNE 30, 2020 OR 2019. 0 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 MEDICAL RESEARCH GRANTS 1102133 0 0 0 0 0 0 1102133 0 1102133 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM FTD BIOMARKERS INITIATIVE GRANT 1102133 WIRED FUNDS 0 0 0 0 0 0 PART I, LINE 2: RESEARCH GRANTS: GRANTEES SUBMIT INTERIM AND FINAL REPORTS WITH PROGRESS AND FINANCIAL INFORMATION. PART III ACCOUNTING METHOD: X 0 EVENT ASSOCIATES INC 162 WEST 56TH STREET SUITE 405 NEW YORK NY 10019 FUND RAISING EVENT PLANNING 0 2080343 65000 2015343 2080343 65000 2015343 AL AK AR CA CO CT DC FL GA HI 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 HOPE RISING 2080343 1951093 129250 163987 2080343 1951093 129250 163987 163987 -34737 SCHEDULE G, PART I, LINE 2B, COLUMN (V) COORDINATION AND PLANNING OF FUND RAISING EVENT "HOPE RISING" IN OCTOBER 2019. 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 UNIVERSITY OF CHICAGO 6054 S DREXEL AVENUE ROOM 300 CHICAGO IL 60637 362177139 501(C)(3) 25000 BASIC SCIENCE PILOT GRANT REGENERATIVE RESEARCH FOUNDATION 1 DISCOVERY DRIVE RENSSELAER NY 12144 203654626 501(C)(3) 60000 SUSAN MARCUS TRANSLATIONAL RESEARCH PILOT GRANT UNIVERSITY OF ALABAMA AT BIRMINGHAM 1825 UNIVERSITY BOULEVARD SHEL 1106 1106 BIRMINGHAM AL 35294 636005396 501(C)(3) 60000 BASIC SCIENCE PILOT GRANT TARGET ALS FOUNDATION INC PO BOX 1598 NEW YORK NY 10101 810756743 501(C)(3) 625000 ALS AND FTD BIOMARKERS RESEARCH 6 0 RESPITE CARE, TRAVEL AND QUALITY OF LIFE GRANTS 252 130771 PART I, LINE 2: RESEARCH GRANTS: GRANTEES SUBMIT INTERIM AND FINAL REPORTS WITH PROGRESS AND FINANCIAL INFORMATION. RESPITE AND TRAVEL GRANTS: GRANTEES SUBMIT RECEIPTS 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 196500 0 0 0 0 0 5895 0 7266 0 209661 0 0 0 NADINE TATTON SCIENTIFIC DIRECTOR 156000 0 0 0 0 0 1560 0 17859 0 175419 0 0 0 CHRISTINE ROGERS STEVENS CHIEF FINANCIAL OFFICER 136875 0 0 0 0 0 4106 0 16962 0 157943 0 0 0 X 10 86420 HI/LOW DATE OF GIFT 0 1 0 FORM 990, PART VI, SECTION B, LINE 11B THE COMPLETE 990 WAS FORWARDED TO AFTD'S AUDIT COMMITTEE, WHICH REVIEWED IT IN DETAIL AND FORWARDED IT ALONG TO THE BOARD OF DIRECTORS. BOARD MEMBERS RECEIVE A COPY OF THE COMPLETED 990 IN ADVANCE OF FILING, AND WERE ADVISED THAT THEY WOULD NEED TO READ IT IN FULL. THE AUDIT COMMITTEE CHAIR, TREASURER, CEO AND CFO WERE AVAILABLE TO CLARIFY ANY ISSUES. DURING A BOARD MEETING IN SEPTEMBER 2020 TIME WAS RESERVED FOR REVIEW AND DISCUSSION OF THE 990. THE 990 WAS APPROVED BY THE BOARD BEFORE FILING. 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 PREVIOUS SALARY COMPARABILITY DATA FOR NON PROFITS OF SIMILAR SIZE NATIONALLY AND IN THE GREATER PHILADELPHIA AREA ADJUSTED FOR COST OF LIVING INCREASES. 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 1650 OWENS STREET SUITE 205 SAN FRANCISCO CA 94158 473601782 PROVIDES PATIENT REGISTRY FOR THOSE AFFECTED BY FTD DE 501(C)(3) LINE 7 N/A 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0