2016-11-08T12:31:44-06:00 2016-06-30 231518888 MAILLIE LLP 624 WILLOWBROOK LANE WEST CHESTER PA 19382 990 2015-07-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 PAUL LESTER TREASURER 2675147221 2016-11-08 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 2015 2017-02-10 21:41:12Z PAUL LESTER 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 8272562 0 X WWW.THEAFTD.ORG X 2002 PA PROMOTE AND FUND RESEARCH INTO FINDING THE CAUSE, 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. 20 20 15 369 0 0 2162391 8057371 0 0 2637 2402 22773 123761 2187801 8183534 695261 897107 0 0 790683 1155342 0 0 286192 474287 618800 1960231 2671249 227570 5512285 3039423 8752417 317925 434468 2721498 8317949 X PROMOTE AND FUND RESEARCH INTO FINDING THE CAUSE, 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. 1 0 1288363 830000 RESEARCHEACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSIS AND THE FIRST THERAPEUTICS FOR FTD.INITIATED THREE MAJOR NEW INITIATIVES: A $5 MILLION, 5-YEAR FTD BIOMARKER PROGRAM; THE FTD DISORDERS REGISTRY, AND IN PARTNERSHIP WITH THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION, A $10 MILLION, 10-YEAR PROGRAM TO STIMULATE CLINICAL TRIALS FOR THE FTD DISORDERS. AFTD EXPANDED ITS RESEARCH STAFF FROM ONE TO THREE, AND AWARDED TWO PILOT GRANTS AND THREE DRUG DISCOVERY GRANTS. 387008 67107 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 EVERY DAY.ANSWERED 2,194 HELPLINE CALLS; STARTED TWO NEW PHONE SUPPORT GROUPS, FOR MALE CAREGIVERS AND FOR CAREGIVERS DEALING WITH FTD/ALS; TRAINED AND AFFILIATED 55 SUPPORT GROUP LEADERS RUNNING 44 GROUPS ACROSS THE COUNTRY UNDER THE AUSPICES OF A NEW AFTD PROGRAM TO TRAIN, AFFILIATE AND PROVIDE ONGOING SUPPORT AND EDUCATION TO FTD SUPPORT GROUP LEADERS. 539292 EDUCATION, AWARENESS AND INFORMATIONEDUCATIONAFTD 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.AUTHORED A CHAPTER FROM THE FAMILY'S PERSPECTIVE FOR THE 2ND EDITION OF THE MEDICAL TEXTBOOK: HODGE'S FRONTOTEMPORAL DEMENTIA; PUBLISHED FOUR ISSUES OF PARTNERS IN FTD CARE, THE EDUCATION MODULE FOR PROFESSIONAL CAREGIVERS; HOSTED MONTHLY CALLS OF THE THINKTANK, COMPRISED OF INDIVIDUALS DIAGNOSED WITH FTD, TO BETTER UNDERSTAND THIS PERSPECTIVE AND HAVE IT INFORM AFTD'S PROGRAMS. AWARENESSAWARENESS IS THE KEY TO EVERYTHING OUR COMMUNITY NEEDS TO ACCOMPLISH. WHEN 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, WE WILL BE A GOOD WAY DOWN THE ROAD TO OUR GOAL.PARTICIPATED IN THE FIRST WORLD FTD AWARENESS WEEK, CELEBRATED IN 10 COUNTRIES; CREATED TWO FULL PAGE ADS THAT WERE PRINTED IN THE NEW YORK TIMES AND 11 ADDITIONAL NATIONAL PUBLICATIONS; HOSTED OUR FIRST SOCIAL MEDIA CAMPAIGN, #WHOILOVEFTDADVOCACYOUR 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 ON WASHINGTON DC AND OTHER SEATS OF POWER, WHERE DECISIONS ABOUT RESEARCH FUNDING AND SERVICES ARE MADE.HOSTED A MEETING OF THE FTD TREATMENT STUDY GROUP, ATTENDED BY REPRESENTATIVES FROM 23 PHARMA AND BIOTECH COMPANIES, FDA, EMA, NIH REPRESENTATIVES, AND ACADEMIC RESEARCHERS. CO-SPONSORED A MEETING AT NIH TO SET THE NATIONAL AGENDA FOR NON-ALZHEIMER'S DEMENTIAS FOR THE NEXT THREE YEARS. 2214663 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 13 0 1 15 1 0 0 0 0 0 0 0 0 0 0 X 20 20 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 6.00 X X 0 0 0 JARY LARSEN PHD IMMEDIATE PAST CHAIR 10.00 X 0 0 0 BRYAN DALESANDRO DIRECTOR 4.00 X 0 0 0 DEBBIE FENOGLIO VICE-CHAIR 4.00 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 EARL COMSTOCK ESQ DIRECTOR 2.00 X 0 0 0 EMILY LEVY DIRECTOR 4.00 X 0 0 0 LISA RADIN DIRECTOR 2.00 X 0 0 0 POP SHENIAN DIRECTOR 4.00 X 0 0 0 JOHN WHITMARSH PHD DIRECTOR 4.00 X 0 0 0 GAIL ANDERSEN CHAIR 6.00 X X 0 0 0 STEVE BELLWOAR DIRECTOR 2.00 X 0 0 0 PAUL LESTER TREASURER 2.00 X X 0 0 0 KATHY MELE DIRECTOR 2.00 X 0 0 0 STEVE FENOGLIO DIRECTOR 2.00 X 0 0 0 SUSAN LADEN DIRECTOR 2.00 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 2.00 X 0 0 0 SUSAN DICKINSON EXECUTIVE DIRECTOR 40.00 X 120000 0 3600 120000 0 3600 1 0 0 0 0 8057371 89324 8057371 2106 2106 89324 89028 296 296 296 CONTRACT 541700 110795 110795 BOOK & DVD SALES & CON 900099 12966 12966 123761 8183534 124057 0 2106 820000 820000 77107 77107 123600 80340 24720 18540 869420 676908 49766 142746 73028 56758 4143 12127 89294 69652 5435 14207 103589 39085 45126 19378 4800 4800 97431 64018 8550 24863 77484 54239 11623 11622 34151 32097 239 1815 168411 157845 6870 3696 6561 6561 6319 4423 948 948 WEBSITE 34030 34030 POSTAGE 23313 14389 1457 7467 MISCELLANEOUS 19015 6133 653 12229 TELEPHONE 17418 12193 2612 2613 26278 10646 1691 13941 2671249 2214663 170394 286192 15848 15141 2668443 2599329 225000 5750000 7120 21036 6262 60868 41827 21651 15049 20176 95412 279578 6289 6289 3039423 8752417 17925 9468 300000 125000 0 300000 317925 434468 X 1918275 2196410 803223 6121539 2721498 8317949 3039423 8752417 5512285 84166 0 X X 0 1 X 1 0 X 1473492 1230706 1544802 2162391 2307371 8718762 1473492 1230706 1544802 2162391 2307371 8718762 751992 7966770 6491 2810 2770 2637 2402 17110 8735872 171251 0.91200 0.92430 X SCHEDULE A, PART VI, LIST OF UNUSUAL GRANTS: DESCRIPTION: BIOMARKERS INITIATIVE GRANT & ADMINISTRATIVE FUND DATE: 09/09/15 AMOUNT: 5750000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3350 3350 2671249 2674599 283730 70933 0 0 191196 212792 248012 283730 935730 1403595 1300 1500 1150 3350 7300 47799 53198 62003 70933 233933 350900 41827 21651 20176 20176 8183534 0 8183534 0 8183534 2671249 0 2671249 0 2671249 1 ALZHEIMER DRUG DISCOVERY FOUNDATION 57 W 57TH STREET STE 10019 NEW YORK NY 10019 201082179 501(C)(3) 700000 DRUG DISCOVERY UNIVERSITY OF MASSACHUSSETTS MEDICAL SCHOOL SANDRA ALMEIDA PHD 55 LAKE AVENUE NORTH WORCESTER MA 01655 043167352 501(C)(3) 60000 PILOT GRANT FUNDING THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA ROY HAMILTON MD MS 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 60000 PILOT GRANT FUNDING 3 RESPITE CARE AND TRAVEL GRANTS 169 67107 ECONOMIC BURDEN GRANT 1 10000 PART I, LINE 2: RESPITE AND TRAVEL GRANTS: GRANTEES SUBMIT RECEIPTS AND PAYMENT IS MADE VIA REIMBURSEMENT. RESEARCH GRANTS: GRANTEES SUBMIT INTERIM (SIX MONTH) AND FINAL (TWELVE MONTH) REPORTS WITH PROGRESS AND FINANCIAL INFORMATION. X 7 89324 DAILY AVG. MARKET VALUE 0 1 1 PART I, LINE 32B: AFTD RETAINS THE SERVICES OF PRIME CETERA INVESTMENT SERVICES TO SELL SHARES OF SECURITIES RECEIVED AS CONTRIBUTIONS. FORM 990, PART III, LINE 2 TRAINED AND AFFILIATED 55 SUPPORT GROUP LEADERS RUNNING 44 GROUPS ACROSS THE COUNTRY UNDER THE AUSPICES OF A NEW AFTD PROGRAM TO TRAIN, AFFILIATE AND PROVIDE ONGOING SUPPORT AND EDUCATION TO FTD SUPPORT GROUP LEADERS. FORM 990, PART VI, SECTION A, LINE 2 EARL COMSTOCK AND HELEN ANN COMSTOCK 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 11 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 WERE GIVEN AT LEAST 2 WEEKS TO REVIEW AND WERE ADVISED THAT THEY WOULD NEED TO READ IT IN FULL. THE AUDIT COMMITTEE CHAIR, TREASURER AND EXECUTIVE DIRECTOR WERE AVAILABLE TO CLARIFY ANY ISSUES. DURING A BOARD MEETING IN OCTOBER 2016 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 EXECUTIVE DIRECTOR 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/EXECUTIVE DIRECTOR IN QUESTION. FORM 990, PART VI, SECTION B, LINE 15A THE PERFORMANCE REVIEW OF AFTD'S EXECUTIVE DIRECTOR 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 EXECUTIVE DIRECTOR 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 THIS 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 REGISTRY DE N/A RELATED 84166 279578 0 1 0.50000 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 100000 CASH PAYMENT THE FTD DISORDERS REGISTRY LLC L 110795 INVOICED AMOUNTS