2015-10-15T13:17:32-05:00 2015-06-30 231518888 MAILLIE LLP 624 WILLOWBROOK LANE WEST CHESTER PA 19382 990 2014-07-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 BRYAN DALESANDRO TREASURER 2675147221 2015-10-15 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 2014 2016-03-07 17:11:31Z BRYAN DALESANDRO 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 2187801 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. 19 19 11 203 0 0 2678682 2162391 0 0 -2132 2637 85 22773 2676635 2187801 218348 695261 0 0 691606 790683 0 0 239520 445790 474287 1355744 1960231 1320891 227570 2513073 3039423 14557 317925 2498516 2721498 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. 0 0 872205 630000 RESEARCHEACH YEAR AFTD INVESTS ABOUT ONE-THIRD OF EVERY DOLLAR IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSIS AND THE FIRST THERAPEUTICS FOR FTD.THIS YEAR AFTD AWARDED TWO PILOT GRANTS, ONE IN SUPPORT OF BASIC SCIENCE AND THE OTHER FOR A TRANSLATIONAL PROJECT. FOR THE FIRST TIME WE ALSO AWARDED TWO POSTDOCTORAL FELLOWSHIPS. GRANTS FOR FTD DRUG DISCOVERY WERE AWARDED TO CHARLOTTE TEUNISSEN, PH.D. AND MATTHEW DISNEY, PH.D. AFTD ALSO AWARDED TWO SPECIAL GRANTS: ONE FOR A TAU PET IMAGING STUDY TO DETERMINE IF A PROMISING PET IMAGING BIOMARKER FOR ALZHEIMER'S WILL BE EFFECTIVE IN DISCERNING BETWEEN SUBTYPES OF FTD; THE OTHER FOR A STUDY TO DETERMINE THE ECONOMIC BURDEN OF A DIAGNOSIS OF FTD.AFTD CO-SPONSORED THE 9TH INTERNATIONAL FTD CONFERENCE IN VANCOUVER, CANADA AND A MEETING OF INVESTIGATORS ON THE GENETICS OF FTD AND ALS. 302190 65261 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.THIS YEAR MORE THAN 2,100 PEOPLE CONTACTED HELPLINE--CAREGIVERS, FAMILY MEMBERS, PERSONS DIAGNOSED AND THE PROFESSIONALS WHO CARE FOR THEM. THE NUMBER OF RESPITE AND TRAVEL GRANTS AWARDED INCREASED IN BOTH NUMBER AND TOTAL AMOUNT AWARDED. MORE THAN 200 PEOPLE ATTENDED THE ANNUAL EDUCATION CONFERENCE IN SAN DIEGO, AND AFTD CONTINUES TO EXPLORE THE WAYS WE CAN HELP MEET THE NEEDS OF DISTINCT GROUPS OF OUR CONSTITUENTS, INCLUDING PERSONS DIAGNOSED, YOUNG ADULTS AND KIDS AND TEENS. 435042 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. THIS YEAR MORE THAN 175,000 VISITORS CAME TO THE MAIN WEBSITE, AND MORE THAN 3,300 PEOPLE VISITED THE AFTD KIDS AND TEENS SITE. THE PROFESSIONAL EDUCATION PROGRAM PARTNERS IN FTD CARE PUBLISHED EDUCATION MODULES ON: CHANGES IN EATING AND MANAGING RELATED COMPULSIVE BEHAVIORS, THE LOSS OF EMPATHY AND CONNECTION IN FTD, AND SEXUAL BEHAVIOR IN FTD. GRADUATE INTERN BRIANNA SULLIVAN PRESENTED A POSTER AT THE 9TH INTERNATIONAL CONVERENCE ON AN ANALYSIS OF QUESTIONS POSED VIA AFTD'S HELPLINE.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.IN ITS SECOND YEAR, CELEBRATION OF FTD AWARENESS WEEK EXPANDED, AND WAS CELEBRATED AT 80 EVENTS IN 36 STATES. CONSTITUENTS PARTICIATED IN THE WITH LOVE CAMPAIGN AND FOUR 5K WALK/RUNS ACROSS THE COUNTRY. AFTD'S FILM IT IS WHAT IT IS WAS BROADCAST ON DISCOVERY'S LIFETIME CHANNEL. MEMBERSHIP IN AFTD'S YOUNG ADULTS FACEBOOK GROUP INCREASED BY 37% AND THE NUMBER OF @AFTDCURE TWITTER FOLLOWERS INCREASED BY 59%.ADVOCACYOUR 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.THIS YEAR FTD WAS OFFICIALLY RECOGNIZED AS A PRIORITY IN THE NATIONAL NAPA PLAN TO CURE ALZHEIMER'S AND RELATED DEMENTIAS BY 2025. REPRESENTATIVES FROM AFTD SPOKE AT EACH OF THE NAPA ADVISORY COUNCIL MEETINGS. 1609437 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 1 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 15 0 1 11 1 0 0 0 0 0 0 0 0 0 0 X 19 19 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 CHAIR 10.00 X X 0 0 0 BRYAN DALESANDRO TREASURER 4.00 X 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 FRANCINE LADEN SCD DIRECTOR 2.00 X 0 0 0 EMILY LEVY DIRECTOR 4.00 X 0 0 0 LINDA NEE DIRECTOR 2.00 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 DIRECTOR 4.00 X 0 0 0 STEVE BELLWOAR DIRECTOR 2.00 X 0 0 0 PAUL LESTER DIRECTOR 2.00 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 SUSAN DICKINSON EXECUTIVE DIRECTOR 40.00 X 108333 0 3250 108333 0 3250 1 0 0 0 0 2162391 70135 2162391 2637 2637 ANNUAL CONFERENCE 900099 12423 12423 BOOK & DVD SALES 900099 10350 10350 22773 2187801 22773 0 2637 520000 520000 65261 65261 110000 110000 111583 73667 21666 16250 572412 438368 25038 109006 44773 33132 2686 8955 61915 45817 3715 12383 96160 52001 19670 24489 58588 36830 4451 17307 68893 48225 10334 10334 19696 17404 1025 1267 104774 99133 4240 1401 4928 4928 6757 4730 1014 1013 WEBSITE 30515 21361 4577 4577 POSTAGE 19666 12562 1329 5775 TELEPHONE 19198 13438 2880 2880 MISCELLANEOUS 15866 7637 1627 6602 29246 9871 2094 17281 1960231 1609437 111274 239520 15500 15848 2367202 2668443 100000 225000 0 7120 14339 6262 30139 15090 9743 15049 95412 6289 6289 2513073 3039423 14557 17925 0 300000 14557 317925 X 1300640 1918275 1197876 803223 2498516 2721498 2513073 3039423 227570 -4588 0 X X 0 1 X 1 0 X 1153120 1473492 1230706 1544802 2162391 7564511 1153120 1473492 1230706 1544802 2162391 7564511 553607 7010904 5709 6491 2810 2770 2637 20417 7584928 48802 0.92430 0.84430 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1150 1150 1959081 1960231 248012 62003 0 0 478083 191196 212792 248012 1130083 1695125 700 1300 1500 1150 4650 47799 53198 62003 163000 244500 30139 15090 15049 15049 X 2187801 0 2187801 0 2187801 1960231 0 1960231 0 1960231 PART X, LINE 2: THE ORGANIZATION BELIEVES IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE ORGANIZATION'S FEDERAL RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX (FORM 990) FOR TAX YEARS 2011, 2012 AND 2013 IS SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THE TAX RETURNS WERE FILED. 1 0 0 0 0 0 0 0 0 0 NORTH AMERICA TWO-YEAR TERM AS AFTD POSTDOCTORAL FELLOW - TO BE USED TOWARDS GRANT: "DEVELOPING A TOOL FOR DISCRIMINATING SOCIAL COGNITION DEFICITS IN BVFTD FROM THAT OF DEPRESSION." 110000 1 0 0 0 0 0 0 1 ALZHEIMER DRUG DISCOVERY FOUNDATION 57 W 57TH STREET STE 10019 NEW YORK NY 10019 201082179 501(C)(3) 100000 DRUG DISCOVERY THE REGENTS OF THE UNIVERSITY OF CALIFORNIA JENNIFER YOKOYAMA PHD 1855 FOLSOM STREET MCB 425 BOX 0897 0897 SAN FRANCISCO CA 94143 946036493 501(C)(3) 60000 AFTD SUSAN MARCUS CLINICAL PILOT GRANT PROJECT: "RNA SIGNATURES OF FRONTOTEMPORAL DEMENTIA AND ALS DUE TO C9ORF72 EXPANSION." THE REGENTS OF THE UNIVERSITY OF MICHIGAN DR HILARY ARCHBOLD 3003 S STATE STREET ANN ARBOR MI 48109 386006309 501(C)(3) 110000 2 YEAR TERM AS AFTD POSTDOCTORAL FELLOW: RNA DYSFUNCTION IN FRONTOTEMPORAL DEMENTIA FLORIDA ATLANTIC UNIVERSITY JAMES GALVIN 777 GLADES ROAD BC-71 RM 209 BOCA RATON FL 33431 650267991 501(C)(3) 90000 GRANT FUNDING FOR: "THE SOCIAL AND ECONOMIC BURDEN OF FRONTOTEMPORAL DEGENERATION" CLINICAL RESEARCH. THE REGENTS OF THE UNIVERSITY OF CALIFORNIA GIL RABINOVICI MD 675 NELSON RISING LANE STE 190 SAN FRANCISCO CA 94158 946036493 501(C)(3) 100000 GRANT FUNDING FOR: "CLINICOPATHOLOGICAL VALIDATION OF THE TAU PET TRACER [18F] AV1451 IN FRONTOTEMPORAL DEMENTIA: A MULTI-CENTER PILOT PROPOSAL" CLINICAL RESEARCH. EMORY UNIVERSITY THOMAS KUKAR PHD PO BOX 935084 RRC STE 5123 ATLANTA GA 30322 580566256 501(C)(3) 60000 AFTD BASIC PILOT GRANT PROJECT: "IDENTIFICATION OF THE SIGNALING RECEPTOR THAT MEDIATES THE NEUROTROPHIC ACTIVITY OF PROGRANULIN (PGRN)." RESPITE CARE AND TRAVEL GRANTS 171 65261 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 70135 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 VI, SECTION A, LINE 2 EARL COMSTOCK AND HELEN ANN COMSTOCK HAVE A FAMILY RELATIONSHIP - SON AND MOTHER. 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 SEPTEMBER 2015 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 INPUT THAT THE BOARD CHAIR OBTAINED FROM AFTD OFFICERS AND COMMITTEE CHAIRS. THE PERFORMANCE REVIEW WAS COMPOSED BY THE CHAIR AND WAS REVIEWED BY THE ELECTED OFFICERS. 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 -4588 82913 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 7120 INVOICED AMOUNT