2019-10-09T11:32:47-05:00 2019-06-30 131639826 EISNERAMPER LLP 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2018-07-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 SUSAN L-J DICKINSON CHIEF EXECUTIVE OFFICER 2675147221 2019-09-24 1 HELEN M MARTIN P01330899 2158818800 64.238.150.4 2019-09-24 15:36:23 ED P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 0EDE4F5BE59FB99924CAAEE7408372872BC47088 2018 2019-02-21 02:37:17Z SUSAN L-J DICKINSON 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 10258186 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. 17 17 24 346 0 0 14621068 8919063 186178 150345 63432 154086 -68679 -81551 14801999 9141943 1359510 3603039 0 0 1813252 1974884 65000 65000 599743 1372445 1338911 4610207 6981834 10191792 2160109 17543745 21156373 744795 2033467 16798950 19122906 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 4222641 3477975 138926 RESEARCH - EACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSIS AND THE FIRST THERAPEUTICS FOR FTD. TO THAT END, AFTD AWARDED MULTIPLE GRANTS DURING FY19,INCLUDING TWO POSTDOCTORAL FELLOWSHIPS, THREE PILOT GRANTS AND FOUR BIOMARKERS GRANTS. AFTD INVESTED $2.5 MILLION INTO THE DIAGNOSTICS ACCELERATOR PROGRAM, AN INITIATIVE OF THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION THAT IS WORKING TO DEVELOP METHODS THAT WILL MORE EFFECTIVELY DIAGNOSE ALL TYPES OF DEMENTIA. AFTD FURTHER DEEPENED ITS COMMITMENT TO DISCOVERING VIABLE FTD BIOMARKERS THROUGHOUT THE YEAR. IN FEBRUARY, AFTD HOSTED A WORKSHOP ON THE DEVELOPMENT OF TDP-43 BIOMARKERS FOR FTD, CONVENING SCIENTISTS AND KEY OPINION LEADERS IN ACADEMIA AND INDUSTRY. ADDITIONALLY, AFTD BECAME A PARTNERS IN THE FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH'S BIOMARKERS CONSORTIUM. 927852 125064 11419 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 2,306 HELPLINE CALLS AND EMAILS. WE EXPANDED OUR NETWORK OF AFFILIATED SUPPORT GROUPS; AS OF JUNE 30, 2019, THERE ARE 100 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING GROUPS IN 38 DIFFERENT STATES. AFTD AWARDED 277 COMSTOCK GRANTS TO FTD CAREGIVERS AND PERSONS DIAGNOSED A TOTAL THAT INCLUDES TRAVEL AND RESPITE GRANTS AS WELL AS OUR NEW QUALITY OF LIFE (QOL) GRANTS. FOLLOWING THE SUCCESSFUL PILOTING OF 20 QOL GRANTS LAST YEAR, AFTD AWARDED QOL GRANTS IN FY19.EDUCATION - 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. MORE THAN 330 PEOPLE ATTENDED THE ANNUAL AFTD EDUCATION CONFERENCE IN LOS ANGELES, AND FOR THE FIRST TIME, AFTD WORKED WITH AN OUTSIDE VENDOR TO PROFESSIONALLY LIVESTREAM THE CONFERENCE TO OUR AUDIENCE. AFTD ADDITIONALLY PUBLISHED TWO EXPERT-LED WEBINARS AND PUBLISHED AN ISSUE OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES. AFTD STAFF AND VOLUNTEERS REPRESENTED THE ORGANIZATION AND PROMOTED FTD EDUCATION AT SEVERAL HIGH-PROFILE EVENTS THROUGHOUT THE COUNTRY, INCLUDING THE AMERICAN SOCIETY OF AGING'S 2019 AGING IN AMERICA CONFERENCE, AS WELL AS THE 2019 MEETING OF THE MINDS DEMENTIA CONFERENCE, CO-HOSTED BY THE ALZHEIMER'S ASSOCIATION AND THE MAYO CLINIC. 744964 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. 5895457 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 45 0 1 24 1 0 0 0 0 0 0 0 0 0 0 X 17 17 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 CHRISTINE ROGERS STEVENS 2675147221 290 KING OF PRUSSIA RD BLDG 2 SUITE RADNOR PA 19087 SANDRA GROW DIRECTOR 3.00 X 0 0 0 KIMBERLY PANG TORRES DIRECTOR (EFF 5/19) 2.00 X 0 0 0 HELEN-ANN COMSTOCK DIRECTOR 2.00 X 0 0 0 MICHAEL STOWELL PHD DIRECTOR 4.00 X 0 0 0 GAIL ANDERSEN CHAIR 10.00 X X 0 0 0 STEVE BELLWOAR DIRECTOR 2.00 X 0 0 0 BRIAN ROSE TREASURER 4.00 X X 0 0 0 KATHY MELE DIRECTOR 4.00 X 0 0 0 STEVE FENOGLIO SECRETARY 4.00 X X 0 0 0 RICK CHILDS DIRECTOR 4.00 X 0 0 0 MATTHEW HATFIELD DIRECTOR 2.00 X 0 0 0 BETH WALTER DIRECTOR 4.00 X 0 0 0 DANIEL HEDAYA DIRECTOR 3.00 X 0 0 0 KACY KUNESH DIRECTOR 3.00 X 0 0 0 PAUL LESTER DIRECTOR 4.00 X 0 0 0 DAVID PFEIFER VICE CHAIR 4.00 X X 0 0 0 JARY LARSEN PHD DIRECTOR (EFF 5/19) 4.00 X 0 0 0 SUSAN L-J DICKINSON CHIEF EXECUTIVE OFFICER 40.00 X 182250 0 8008 CHRISTINE ROGERS STEVENS CHIEF FINANCIAL OFFICER 40.00 X 122737 0 20584 BENJAMIN FREEMAN DIR OF DEVELOPMENT & COMMUNICATIONS 40.00 X 122258 0 3849 NADINE TATTON SCIENTIFIC DIRECTOR 40.00 X 149670 0 19341 SHARON DENNY SR DIRECTOR OF PROGRAMS 40.00 X 117477 0 3681 694392 0 55463 5 0 1 0 0 1810899 7108164 113309 8919063 FTD REGISTRY 541700 138926 138926 CONFERENCE REGISTRATIO 900099 8925 8925 EDUC & AWARENESS PRODU 900099 2494 2494 150345 179830 179830 888948 914692 -25744 -25744 -25744 120000 1810899 201551 -81551 -81551 9141943 150345 0 72535 2588581 2588581 125064 125064 889394 889394 353794 144199 161529 48066 1315099 982312 134864 197923 31554 23787 326 7441 151135 111977 4062 35096 123302 81898 14294 27110 65503 18975 36106 10422 19954 19954 65000 65000 143185 116356 12052 14777 56400 56400 171784 115006 14582 42196 120320 84224 18048 18048 26566 23971 1198 1397 362266 336494 25772 9945 3292 5948 705 14726 10308 2209 2209 INDIRECT EVENT EXPENSES 123382 64750 58632 PRINTING AND COPYING 76820 47986 5189 23645 OFFICE & PROG SUPPLIES 65439 28861 24605 11973 POSTAGE 29327 17056 1760 10511 53294 24566 4136 24592 6981834 5895457 486634 599743 29772 285925 6135315 6743735 11233007 10012880 11195 22148 114014 114459 4490 2665 11770 1825 3966729 8672 8672 17543745 21156373 86623 130678 610672 1867789 47500 35000 744795 2033467 X 5316649 7836018 11482301 11286888 16798950 19122906 17543745 21156373 X 2160109 171567 -12583 4863 X X 0 1 X 1 0 X 2162391 2307371 4190242 5358325 8919063 22937392 2162391 2307371 4190242 5358325 8919063 22937392 6931923 16005469 2637 2402 2783 63330 179830 250982 23188374 637399 0.69020 0.83020 X 4515 4515 6977319 6981834 499092 124773 0 0 283730 423361 380510 499092 1586693 2380040 3350 2850 6863 4515 17578 70933 105840 95128 124773 396674 595011 4490 2665 1825 1825 X 9387222 171567 86295 257862 9129360 12583 12583 9141943 7063264 86295 86295 6976969 4865 4865 6981834 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, 2019 AND 2018, 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, 2019 OR 2018. PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURNED GRANT FUNDS OFFSET AGAINST GRANT EXPENSE ON FINANCIAL STATEMENT 4,865. 0 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 MEDICAL RESEARCH GRANTS 889394 0 0 0 0 0 0 889394 0 889394 EUROPE (INCLUDING ICELAND & GREENLAND) FTD BIOMARKERS INITIATIVE GRANT 247272 WIRED FUNDS EUROPE (INCLUDING ICELAND & GREENLAND) POSTDOCTORAL FELLOWSHIP 110000 WIRED FUNDS EUROPE (INCLUDING ICELAND & GREENLAND) FTD BIOMARKERS INITIATIVE GRANT 532122 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. X 0 EVENT ASSOCIATES INC 162 WEST 56TH STREET SUITE 405 NEW YORK NY 10019 FUND RAISING EVENT PLANNING 0 1930899 65000 1865899 1930899 65000 1865899 HOPE RISING 1930899 1810899 120000 140083 61468 1930899 1810899 120000 140083 61468 201551 -81551 SCHEDULE G, PART I, LINE 2B, COLUMN (V) COORDINATION AND PLANNING OF FUND RAISING EVENT "HOPE RISING" IN OCTOBER 2018. 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 UNIVERSITY OF CALIFORNIA - BERKELEY 2195 HEARST AVE MAIL CODE 1103 BERKELEY CA 947201103 946002123 501(C)(3) 110000 POSTDOCTORAL FELLOWSHIP MAYO CLINIC - JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)(3) 565248 FTD BIOMARKERS INITIATIVE THE FTD DISORDERS REGISTRY LLC 637 CAROLINA STREET SAN FRANCISCO CA 94107 473601782 501(C)(3) 150000 FTD PATIENT REGISTRY COLUMBIA UNIVERSITY MEDICAL CENTER 154 HAVEN AVE 2ND FLOOR NEW YORK NY 10032 135598093 501(C)(3) 150000 FTD BIOMARKERS INITIATIVE UNIVERSITY OF CHICAGO 6054 S DREXEL AVENUE ROOM 300 CHICAGO IL 60637 362177139 501(C)(3) 60000 BASIC SCIENCE PILOT GRANT JOHNS HOPKINS UNIVERSITY 720 RUTLAND AVENUE BALTIMORE MD 21205 520595110 501(C)(3) 60000 SUSAN MARCUS MEMORIAL FUND CLINICAL RESEARCH PILOT GRANT DREXEL UNIVERSITY 1601 CHERRY ST 1056 THREE PARKWAY BLDG PHILADELPHIA PA 19102 231352630 501(C)(3) 60000 NONPHARMACOLOGICAL THERAPIES PILOT GRANT RESPITE CARE, TRAVEL AND QUALITY OF LIFE GRANTS 167 125064 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 182250 0 0 0 0 0 5468 0 2540 0 190258 0 0 0 NADINE TATTON SCIENTIFIC DIRECTOR 149670 0 0 0 0 0 1495 0 17846 0 169011 0 0 0 X 10 113309 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 2019 TIME WAS RESERVED FOR REVIEW AND DISCUSSION OF THE 990. THE 990 WAS ACCEPTED 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 XI, LINE 9: RETURN OF UNUSED GRANT FUNDS TO AFTD 4,865. ROUNDING -2. 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