2018-10-03T07:11:18-05:00 2018-06-30 131639826 EISNERAMPER LLP 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2017-07-01 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 2018-09-28 1 HELEN M MARTIN P01330899 2158818800 2017 2022-09-23 18:48:47Z SUSAN L-J DICKINSON 290 KING OF PRUSSIA RD NO 320 RADNOR PA 19087 14995342 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. 15 15 21 346 0 0 4190242 14621068 0 186178 2732 63432 140006 -68679 4332980 14801999 3126788 1359510 0 0 1435683 1813252 51576 65000 529641 1051180 1372445 5665227 4610207 -1332247 10191792 8259790 17543745 1303075 744795 6956715 16798950 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 2062268 1262965 170762 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 FY18, INCLUDING A BIOMARKERS GRANT, TWO DRUG-DISCOVERY GRANTS AND THREE PILOT GRANTS, ONE OF WHICH (THE NONPHARMACOLOGICAL THERAPIES AND TOOLS FOR FTD PILOT GRANT) IS NEW FOR THIS YEAR. WE ALSO PRESENTED THE FIRST AWARDS IN OUR TREATFTD INITIATIVE, WHICH PROMOTES INNOVATIVE APPROACHES TO FTD CLINICAL TRIALS. AFTD ALSO HELD A MEETING OF THE FTD TREATMENT STUDY GROUP, CONVENING REPRESENTATIVES OF THE BIOTECH AND PHARMACEUTICAL INDUSTRIES ALONG WITH ACADEMICS AND GOVERNMENT OFFICIALS TO FORMULATE WAYS TO OVERCOME THE BARRIERS TO SUCCESSFUL FTD TREATMENT APPROVAL. 594502 96545 SUPPORT - 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 2,244 HELPLINE CALLS AND EMAILS. WE EXPANDED OUR NETWORK OF AFFILIATED SUPPORT GROUPS; AS OF JUNE 30, 2018, THERE ARE 83 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING GROUPS IN 32 DIFFERENT STATES. AFTD AWARDED 194 COMSTOCK TRAVEL AND RESPITE GRANTS TO FTD CAREGIVERS AND PERSONS DIAGNOSED, AND SUCCESSFULLY PILOTED A NEW COMSTOCK QUALITY OF LIFE GRANT, WHICH GIVES PERSONS DIAGNOSED $500 TO SPEND ON ANY GOOD OR SERVICE THAT THEY FEEL WOULD IMPROVE THEIR QUALITY OF LIFE. 1003583 15416 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. AFTD PUBLISHED THREE 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 340 PEOPLE TO THE ANNUAL AFTD EDUCATION CONFERENCE, THE HIGHEST ATTENDANCE FIGURE TO DATE.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. WITH CRUCIAL SUPPORT FROM SEN. CHARLES SCHUMER, AFTD GOT FTD INCLUDED AS A TOPIC AREA FOR THE PEER-REVIEWED MEDICAL RESEARCH PROGRAM, A $330 MILLION FEDERAL INITIATIVE. AFTD SPONSORED THE NATIONAL ALZHEIMER'S PROJECTS ACT'S SUMMIT ON DEMENTIA CARE, HELD ON THE NATIONAL INSTITUTES OF HEALTH (NIH) CAMPUS. 3660353 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 28 0 1 21 1 0 0 0 0 0 1 1 0 0 0 0 X 15 15 1 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 BONNIE SHEPHERD SECRETARY/VICE CHAIR (THRU 4/18) 6.00 X X 0 0 0 SANDI GROW DIRECTOR (EFF 4/18) 2.00 X 0 0 0 DAVID PFEIFER DIRECTOR (EFF 4/18) 2.00 X 0 0 0 HELEN-ANN COMSTOCK DIRECTOR 2.00 X 0 0 0 JOHN WHITMARSH PHD DIRECTOR (THRU 4/18) 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 SECRETARY 4.00 X X 0 0 0 RICK CHILDS DIRECTOR 4.00 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 4.00 X 0 0 0 KACY KUNESH DIRECTOR 2.00 X 0 0 0 BRIAN ROSE DIRECTOR 4.00 X 0 0 0 MICHAEL STOWELL PHD VICE CHAIR 4.00 X X 0 0 0 DEANNA ANGELO DIRECTOR (THRU 4/18) 2.00 X 0 0 0 SUSAN L-J DICKINSON CHIEF EXECUTIVE OFFICER 40.00 X 142000 0 4725 CHRISTINE ROGERS STEVENS CHIEF FINANCIAL OFFICER 40.00 X 53615 0 7770 DIANNA HUGHBANKS-WHEATON REGISTRY DIRECTOR 40.00 X 103300 0 4944 BENJAMIN FREEMAN DIR OF DEVELOPMENT & COMMUNICATIONS 40.00 X 113261 0 3503 NADINE TATTON SCIENTIFIC DIRECTOR 40.00 X 144450 0 17670 556626 0 38612 4 0 1 0 0 1804086 12816982 30134 14621068 FTD REGISTRY 541700 170762 170762 CONFERENCE REGISTRATION FEES 900099 12501 12501 EDUC & AWARENESS PRODUCT SALES 900099 2915 2915 186178 63330 63330 30266 30164 102 102 102 94500 1804086 163179 -68679 -68679 14801999 186178 0 -5247 1202965 1202965 96545 96545 60000 60000 310028 126458 141417 42153 1241387 962749 87941 190697 31893 26395 570 4928 109225 90322 791 18112 120719 90403 12149 18167 41288 41288 65000 65000 314169 264845 36951 12373 94746 52015 15575 27156 104780 73346 15717 15717 68198 49565 9526 9107 389685 371693 17992 7756 5430 1163 1163 11967 7284 3122 1561 INDIRECT EVENT EXPENSES 104729 52364 52365 PRINTING AND COPYING 82690 59189 713 22788 OFFICE & PROG SUPPLIES 59213 28773 20513 9927 POSTAGE 28690 20643 1871 6176 64534 19369 12914 32251 4610207 3660353 420213 529641 17429 29772 4767883 6135315 3055000 11233007 9320 11195 81369 114014 23520 11750 19526 11770 300591 0 8672 8672 8259790 17543745 38848 86623 1141227 610672 123000 47500 1303075 744795 X 3070098 5316649 3886617 11482301 6956715 16798950 8259790 17543745 X 10191792 -350591 1034 X X 0 1 X 1 0 X 1544802 2162391 2307371 4190242 5358325 15563131 1544802 2162391 2307371 4190242 5358325 15563131 2581018 12982113 2770 2637 2402 2783 63330 73922 15637053 492613 0.83020 0.90370 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6863 6863 4603344 4610207 380510 95128 0 0 248012 283730 423361 380510 1335613 2003420 1150 3350 2850 6863 14213 62003 70933 105840 95128 333904 500856 23520 11750 11770 11770 X 14819666 17667 17667 14801999 0 14801999 4626840 17667 17667 4609173 1034 1034 4610207 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, 2018 AND 2017, 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, 2018 OR 2017. PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURNED GRANT FUNDS OFFSET AGAINST GRANT EXPENSE ON FINANCIAL STATEMENT 1,034. 0 NORTH AMERICA 0 0 MEDICAL RESEARCH GRANTS 60000 0 0 0 0 0 0 60000 0 60000 NORTH AMERICA CLINICAL RESEARCH PILOT GRANT 60000 CHECK 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 1898586 65000 1833586 1898586 65000 1833586 HOPE RISING 1898586 1804086 94500 106344 47313 9522 1898586 1804086 94500 106344 47313 9522 163179 -68679 SCHEDULE G, PART I, LINE 2B, COLUMN (V) COORDINATION AND PLANNING OF FUND RAISING EVENT "HOPE RISING" IN OCTOBER 2017. 1 ALZHEIMER'S DRUG DISCOVERY PROGRAM 104 AIRPORT DRIVE STE 2200 CB1350 CHAPEL HILL NC 275991350 201082179 501(C)(3) 700000 DRUG DISCOVERY AND TREAT FTD INITIATIVE UNIVERSITY OF CALIFORNIA - SAN FRANCISCO 1855 FOLSOM ST STE 425 SAN FRANCISCO CA 941034249 946036493 501(C)(3) 249965 BIOMARKERS UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE STE 2200 CB1350 CHAPEL HILL NC 275991350 566001393 501(C)(3) 60000 BASIC SCIENCE PILOT GRANT WASHINGTON UNIVERSITY 700 ROSEDALE AVENUE ST LOUIS MO 631121408 430653611 501(C)(3) 33000 BIOMARKERS THE FTD DISORDERS REGISTRY LLC 637 CAROLINA STREET SAN FRANCISCO CA 94107 473601782 501(C)(3) 100000 PATIENT REGISTRY TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA-OFFICE OF RESEARCH SERVICES 3451 WALNUT STREET ROOM P-211 PHILADELPHIA PA 191046205 231352685 501(C)(3) 60000 NONPHARMACOLOGICAL THERAPIES PILOT GRANT 6 0 RESPITE CARE, TRAVEL AND QUALITY OF LIFE GRANTS 214 96545 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 0 0 0 0 0 0 0 0 0 NADINE TATTON SCIENTIFIC DIRECTOR 144450 0 0 0 0 0 1447 0 16223 0 162120 0 0 0 X 7 30134 HI/LOW DATE OF GIFT 0 1 0 FORM 990, PART VI, SECTION A, LINE 2 MICHAEL STOWELL AND BONNIE SHEPHERD (RESIGNED FROM BOARD IN APRIL 2018) HAVE A FAMILY RELATIONSHIP - SON AND MOTHER. 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 2018 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 1,034. 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. FORM 990, PART XI, LINE 8, PRIOR PERIOD ADJUSTMENT THE ORGANIZATION'S NET ASSETS AS OF JUNE 30, 2017 HAVE BEEN RESTATED TO CORRECT THE IMPROPER RECOGNITION OF AN INVESTMENT IN LIMITED LIABILITY COMPANY ASSET ($300,591) AND THE EXCLUSION OF A LIABILITY RELATED TO AN UNCONDITIONAL PROMISE-TO-GIVE ($50,000) 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