2017-10-04T15:32:41-05:00 2017-06-30 231518888 MAILLIE LLP 624 WILLOWBROOK LANE WEST CHESTER PA 19382 990 2016-07-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 PAUL LESTER TREASURER 2675147221 2017-09-15 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 96.227.130.2 2017-09-15 12:36:54 ED P BD5841FEA2E54BA7AF00302E734F02DECBD4A071 BD5841FEA2E54BA7AF00302E734F02DECBD4A071 2016 2021-01-29 14:40:06Z PAUL LESTER 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 4479225 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 ALLIED 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 16 228 0 0 8057371 4190242 0 0 2402 2732 123761 140006 8183534 4332980 897107 3126788 0 0 1155342 1435683 0 51576 546518 618800 1051180 2671249 5665227 5512285 -1332247 8752417 8259790 434468 1303075 8317949 6956715 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 ALLIED 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 3571338 3039139 RESEARCHEACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSIS AND THE FIRST THERAPEUTICS FOR FTD. AFTD AWARDED $2 MILLION IN GRANTS THROUGH THE FTD BIOMARKERS INITIATIVE, A FIVE-YEAR PROGRAM TO STIMULATE RESEARCH INTO QUANTIFIABLE, PHYSICAL SIGNS OF FTD'S DEVELOPMENT. WE AWARDED TWO PILOT GRANTS, TWO DRUG-DISCOVERY GRANTS AND TWO POSTDOCTORAL FELLOWSHIPS. AFTD LAUNCHED THE FTD DISORDERS REGISTRY, WHICH SURPASSED A MULTI-YEAR REGISTRANT GOAL IN JUST THREE MONTHS. 493322 87649 SUPPORTAFTD 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 2,451 HELPLINE CALLS AND EMAILS. WE EXPANDED OUR NETWORK OF AFFILIATED SUPPORT GROUPS; AS OF JUNE 30, 2017, THERE ARE 71 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING GROUPS IN 27 DIFFERENT STATES. AFTD AWARDED 180 COMSTOCK TRAVEL AND RESPITE GRANTS TO FTD CAREGIVERS AND PERSONS DIAGNOSED. 818330 EDUCATION, AWARENESS AND INFORMATIONAFTD 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 PUBLISHED THREE NEW ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES. WE PRODUCED THREE EXPERT-LED WEBINARS THROUGH A NEWLY LAUNCHED SERIES. FINALLY, AFTD DREW MORE THAN 320 PEOPLE TO THE ANNUAL AFTD EDUCATION CONFERENCE, THE HIGHEST ATTENDANCE FIGURE TO DATE.AWARENESSAWARENESS IS THE KEY TO ACHIEVING OUR MISSION. OUR GOAL OF A WORLD WITHOUT FTD CANNOT BECOME REALITY UNTIL OUR NEIGHBORS, PHYSICIANS, PROFESSIONAL CAREGIVERS, POLITICAL REPRESENTATIVES AND NEWS REPORTERS ALL UNDERSTAND THIS ESPECIALLY CRUEL FORM OF NEURODEGENERATION AND WHAT IT STEALS FROM OUR LOVED ONES. AFTD HELPED TO SPREAD FTD AWARENESS AROUND THE GLOBE WITH THE SECOND ANNUAL WORLD FTD AWARENESS WEEK, WHICH INCLUDED A TODAY SHOW SEGMENT ON FTD. WITH DONOR SUPPORT, FTD AWARENESS ADS RAN IN TWO SUNDAY ISSUES OF THE NEW YORK TIMES. WITH HELP FROM DISCOVERY COMMUNICATIONS, AN AFTD PSA REACHED MORE THAN 100 MILLION VIEWERS BY AIRING ON DISCOVERY'S NETWORKS.ADVOCACY 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. AFTD REPRESENTED OUR COMMUNITY AT EVERY QUARTERLY MEETING OF THE NATIONAL ALZHEIMER'S PROJECT ACT (NAPA) COUNCIL IN WASHINGTON. WE VISITED SEVERAL CONGRESSIONAL OFFICES IN MAY TO PROVIDE BACKGROUND ON THE NEED FOR A GREATER FEDERAL FOCUS ON FTD. 4882990 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 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 18 0 1 16 1 0 0 0 0 0 1 1 0 0 0 0 X 16 16 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 KS KY ME MD MA MI MN MS NH NJ NM NY NC AL OH OK OR PA RI SC TN UT VA WA WV WI AK AZ AR CA CO CT DC FL GA HI IL ND X X THE ORGANIZATION 2675147221 290 KING OF PRUSSIA RD BLDG 2 SITE RADNOR PA 19087 BONNIE SHEPHERD SECRETARY/VICE CHAIR 6.00 X X 0 0 0 HELEN-ANN COMSTOCK DIRECTOR 2.00 X 0 0 0 DEANNA ANGELLO MBA DIRECTOR 2.00 X 0 0 0 JOHN WHITMARSH 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 PAUL LESTER TREASURER 4.00 X X 0 0 0 KATHY MELE DIRECTOR 4.00 X 0 0 0 STEVE FENOGLIO DIRECTOR/SECRETARY 4.00 X X 0 0 0 RICK CHILDS DIRECTOR 2.00 X 0 0 0 MATT HATFIELD DIRECTOR 2.00 X 0 0 0 BETH WALTER DIRECTOR 4.00 X 0 0 0 DANIEL HEDAYA DIRECTOR 2.00 X 0 0 0 KACY KUNESH DIRECTOR 2.00 X 0 0 0 BRIAN ROSE DIRECTOR 2.00 X 0 0 0 MICHAEL STOWELL PHD DIRECTOR 2.00 X 0 0 0 SUSAN DICKINSON CHIEF EXECUTIVE OFFICER 40.00 X 142500 0 13250 BENJAMIN FREEMAN DEVELOPMENT & COMMUNICATIONS DIRECTOR 40.00 X 116304 0 4517 NADINE TATTON SCIENTIFIC DIRECTOR 40.00 X 138500 0 15571 397304 0 33338 3 0 1 0 0 1812677 2377565 51258 4190242 2783 2783 51258 51309 -51 -51 -51 80600 1812677 94936 -14336 -14336 CONTRACT 541700 139332 139332 BOOKS & DVD SALES 900099 15010 15010 154342 4332980 154291 0 -11553 2230453 2230453 87649 87649 808686 808686 170720 102432 34144 34144 1070078 833591 61968 174519 92340 74048 3611 14681 102545 80738 5745 16062 51576 51576 270318 211105 48914 10299 97240 58082 9499 29659 89399 62579 13410 13410 50426 43948 710 5768 221153 194099 26921 133 7137 7137 9953 6967 1493 1493 INDIRECT EVENT EXPENSES 146423 146423 WEBSITE 55081 38557 8262 8262 POSTAGE 28992 20044 1467 7481 BANK & CREDIT CARD FEES 20140 1 87 20052 54918 30011 12351 12556 5665227 4882990 235719 546518 15141 17429 2599329 4767883 5750000 3055000 21036 9320 60868 81369 48315 28789 20176 19526 279578 300591 6289 8672 8752417 8259790 9468 38848 125000 1141227 300000 123000 434468 1303075 X 2196410 3070098 6121539 3886617 8317949 6956715 8752417 8259790 -1332247 -28987 0 X X 0 1 X 1 0 X 1230706 1544802 2162391 2307371 4190242 11435512 1230706 1544802 2162391 2307371 4190242 11435512 1088803 10346709 2810 2770 2637 2402 2783 13402 11448914 311209 0.90370 0.91200 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2850 2850 5464378 5467228 423361 105840 0 0 212792 248012 283730 423361 1167895 1751843 1500 1150 3350 2850 8850 53198 62003 70933 105840 291974 437961 48315 28789 19526 19526 4134981 0 4134981 197999 197999 4332980 5467228 0 5467228 197999 197999 5665227 PART XI, LINE 4B - OTHER ADJUSTMENTS: INDIRECT EVENTS EXPENSE 197,999. PART XII, LINE 4B - OTHER ADJUSTMENTS: INDIRECT EVENTS EXPENSE 197,999. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 MEDICAL RESEARCH GRANTS 808686 0 0 0 0 0 0 808686 0 808686 EUROPE RESEARCH PILOT GRANT 60000 CHECK EUROPE RESEARCH PILOT GRANT 60000 CHECK EUROPE BIOMARKERS INITIATIVE 450000 CHECK EUROPE BIOMARKERS INITIATIVE 238686 CHECK 4 4 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 1893277 51576 1841701 1893277 51576 1841701 HOPE RISING 1893277 1812677 80600 92875 2061 1893277 1812677 80600 92875 2061 94936 -14336 SCHEDULE G, PART I, LINE 2B, COLUMN (V) COORDINATION AND PLANNING OF FUND RAISING EVENT "HOPE RISING" IN SEPTEMBER 2016. 1 ALZHEIMER DRUG DISCOVERY FOUNDATION 57 W 57TH STREET STE 10019 NEW YORK NY 10019 201082179 501(C)(3) 600000 DRUG DISCOVERY BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 515000 BIOMARKERS INITIATIVE UNIVERSITY OF PITTSBURGH DEPARTMENT OF NEUROLOGY P O BOX 371220 PITTSBURGH PA 152517220 250965591 501(C)(3) 110000 MEDICAL RESEARCH ICAHN SCHOOL OF MEDICINE 1 GUSTAVE L LEVY PLACE NEW YORK NY 10029 136171197 501(C)(3) 110000 MEDICAL RESEARCH WASHINGTON UNIVERSITY 700 ROSEDALE AVENUE ST LOUIS MO 63112 430653611 501(C)(3) 495453 BIOMARKERS INITIATIVE MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 590714831 501(C)(3) 300000 BIOMARKERS INITIATIVE THE FTD DISORDERS REGISTRY LLC 637 CAROLINA STREET SAN FRANCISCO CA 94107 473601782 501(C)(3) 100000 PATIENT REGISTRY 7 7 RESPITE CARE AND TRAVEL GRANTS 180 87649 PART I, LINE 2: RESPITE AND TRAVEL GRANTS: GRANTEES SUBMIT RECEIPTS AND PAYMENT IS MADE VIA REIMBURSEMENT. RESEARCH GRANTS: GRANTEES SUBMIT INTERIM AND FINAL REPORTS WITH PROGRESS AND FINANCIAL INFORMATION. X 0 0 0 0 0 0 0 0 0 SUSAN DICKINSON CHIEF EXECUTIVE OFFICER 142500 0 0 0 0 0 0 0 13250 0 155750 0 0 0 NADINE TATTON SCIENTIFIC DIRECTOR 138500 0 0 0 0 0 0 0 15571 0 154071 0 0 0 X 7 51258 DAILY AVG. MARKET VALUE 0 1 1 PART I, LINE 32B: AFTD RETAINS THE SERVICES OF CETERA INVESTMENT SERVICES LLC TO SELL SHARES OF SECURITIES RECEIVED AS CONTRIBUTIONS. FORM 990, PART VI, SECTION A, LINE 2 MICHAEL STOWELL AND BONNIE SHEPHERD HAVE A FAMILY RELATIONSHIP - SON AND MOTHER. STEPHEN AND DEBBIE FENOGLIO HAVE A FAMILY RELATIONSHIP - SIBLINGS-IN-LAW 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 2017 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 FY RESULTS. IT INCLUDES INPUT THAT THE BOARD CHAIR, VICE CHAIR AND SECRETARY OBTAINED FROM AFTD BOARD MEMBERS, MAC MEMBERS AND MAJOR DONORS. THE PERFORMANCE REVIEW WAS DRAFTED BY THE VICE CHAIR AND SECRETARY AND FINALIZED BY THE CHAIR. A RECOMMENDED SALARY RANGE WAS PUT FORTH BY A COMPENSATION SUBCOMMITTEE CONSISTING OF THE BOARD CHAIR AND FOUNDER/PAST CHAIR. THIS SALARY RANGE WAS DETERMINED AFTER REVIEWING EXTENSIVE SALARY COMPARABILITY DATA FOR THE GREATER PHILADELPHIA AREA. THE FINAL SALARY RANGE WAS APPROVED BY THE FULL BOARD OF DIRECTORS, WHO ALSO EMPOWERED THE EXECUTIVE COMMITTEE TO DETERMINE THE FINAL COMPENSATION PACKAGE FOR THE CEO BASED ON THE APPROVED RANGE. 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 PROCESS IN WHICH THE ORGANIZATION ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT 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 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 THE FTD DISORDERS REGISTRY LLC B 150000 CASH PAYMENT THE FTD DISORDERS REGISTRY LLC L 139332 INVOICED AMOUNTS