2013-10-07T11:59:38-05:00 2013-06-30 231518888 MAILLIE LLP PO BOX 3068 WEST CHESTER PA 193813068 990 2012-07-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 290 KING OF PRUSSIA RD BLDG 2 NO 320 RADNOR PA 19087 BRYAN DALESANDRO 2675147221 2013-09-25 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 2012 2016-02-24 21:20:13Z BRYAN DALESANDRO 290 KING OF PRUSSIA RD BLDG 2 NO 320 RADNOR PA 19087 1247230 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. 17 17 8 150 0 0 454151 1230706 0 0 1930 2810 3920 -2306 460001 1231210 23004 264281 0 0 243254 552412 0 0 137840 212525 345264 478783 1161957 -18782 69253 1190461 1238370 82089 60745 1108372 1177625 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. 0 0 370045 210000 RESEARCHSPONSORED THE 8TH INTERNATIONAL CONFERENCE ON FTD IN MANCHESTER, UK, WHICH CONVENED MORE THAN 500 SCIENTISTS FROM AROUND THE WORLD. CO-SPONSORED A SCIENTIFIC SYMPOSIUM WITH THE ALS ASSOCIATION FOR SCIENTISTS TO SHARE THEIR LATEST FINDINGS ON THE C9ORF72 MUTATION, WHICH CAN LEAD TO FTD AND/OR ALS. SPONSORED A MEETING AT NIH TO CRAFT A COMPREHENSIVE PLAN TO ADDRESS RELATED DEMENTIAS SUCH AS FTD WITHIN THE CONTEXT OF THE NATIONAL ALZHEIMERS PLAN. 248556 54281 SUPPORTBOARD EXPANDED ANNUAL BUDGET FOR RESPITE GRANTS TO $45,000 AND AWARDED $500 GRANTS TO 90 PEOPLE, A 50% INCREASE OVER PREVIOUS YEARS. TRAVEL GRANTS WERE AWARDED $6,200 TO 16 CAREGIVERS TO ATTEND 3 CONFERENCES. AFTD PRESENTED ANNUAL CONFERENCE IN SALT LAKE CITY WHICH ATTRACTED OVER 200 PARTICIPANTS. ALSO PROVIDED SPONSORSHIP SUPPORT FOR TWO ADDITIONAL FTD EDUCATION EVENTS FOR FAMILIES, IN NORTH CAROLINA AND PHILADELPHIA. TOLL-FREE HELPLINE RESPONDED TO 1,637 PHONE AND EMAIL CONTACTS DURING FY 2013. THE NUMBER OF CONTACTS PER MONTH CONTINUES TO INCREASE. INTRODUCED A NEW PUBLICATION THE DOCTOR THINKS ITS FTD, NOW WHAT? A GUIDE FOR MANAGING A NEW DIAGNOSIS. PARTNERED WITH THE UNIVERSITY OF PENNSYLVANIA ON A BOOKLET CALLED UNDERSTANDING THE GENETICS OF FTD. A GUIDE FOR PATIENTS AND THEIR FAMILIES. EXPANDED INTERACTIONS WITH PEOPLE DIAGNOSED WITH FTD. CONDUCTED A FULL BREAKOUT SESSION ATTENDED BY 11 PEOPLE AT THE SALT LAKE CITY CONFERENCE. STARTED A SMALL TELEPHONE SUPPORT GROUP IN APRIL AS A PILOT PROJECT TO LEARN MORE ABOUT NEEDS AND SUPPORT TO THIS PART OF OUR COMMUNITY. HOSTED FIRST WEBINAR TRAINING IN MAY; RECORDED AND POSTED FOR OTHERS TO ACCESS. PRESENTED SESSION ON FTD CLINICAL TRIALS DESIGNED TO HELP EDUCATE AND EMPOWER FAMILIES TO UNDERSTAND EMERGING OPPORTUNITIES TO PARTICIPATE IN CLINICAL TRIALS OF DRUGS DEVELOPED FOR FTD. 329218 EDUCATION, AWARENESS AND INFORMATIONPARTNERS IN FTD CARE CONTINUE QUARTERLY E-NEWSLETTERS, EXPANDED CONTENT TO CASE STUDY, INFO ON INTERVENTIONS AND WHAT TO DO ABOUT SHEET WITH PRACTICAL TIPS. THE QUARTERLY E-NEWSLETTER NOW REACHES MORE THAN 1100 PROFESSIONALS. EXPANDED INFORMATION IN THE HEALTHCARE PROFESSIONAL SECTION OF THE WEBSITE. IT NOW INCLUDES INFORMATION ON CLINICAL FEATURES, DIAGNOSING AND PHARMACOLOGICAL TREATMENT IN FTD WITH LINKS TO CLINICAL CRITERIA AND KEY RESEARCH PUBLICATIONS. AFTD HAS COLLABORATED WITH PROFESSIONALS ACROSS HEALTHCARE DISCIPLINES TO INCREASE EDUCATION ABOUT FTD. IN FY 2013 AFTD TOOK SOME VITAL STEPS IN CREATING MORE AWARENESS OF FTD. THE ORGANIZATION CELEBRATED ITS 10TH ANNIVERSARY WITH A FORMAL EVENT CALLED CARE & CURE AND DOCUMENT THE FIRST DECADE OF ACCOMPLISHMENTS IN A VIDEO THAT IS ARCHIVED ON YOUTUBE. NBC CHIEF SCIENCE AND HEALTH CORRESPONDENT ROBERT BAZELL REPORTED A SEGMENT ON FTD THAT AIRED ON NBC NIGHTLY NEWS WITH BRIAN WILLIAMS ON JUNE 13. THIS PAST YEAR AFTD ALSO BECAME MORE ACTIVELY ENGAGED IN ADVOCATING FOR RESOURCES AND SERVICES FOR FAMILIES AFFECTED BY FTD. AN AFTD REPRESENTATIVE ATTENDED AND PRESENTED COMMENTS AT EACH OF THE QUARTERLY MEETINGS OF THE NATIONAL ALZHEIMERS PROJECT STEERING COMMITTEE.STAFF AND BOARD MEMBERS MET WITH MEMBERS OF CONGRESS AND KEY VOLUNTEERS TO INTRODUCE THEM TO THE CHALLENGES THAT FTD PRESENTS TO CITIZENS AFFECTED BY THE DISEASE, AND TO EXPLORE THE POTENTIAL OF DECLARING A NATIONAL FTD AWARENESS WEEK. TO FUEL OUR WORK IN BOTH AWARENESS AND ADVOCACY, THIS YEAR AFTD CREATED A NEW STAFF POSITION OF VOLUNTEER MANAGER, TO RECRUIT, TRAIN, AND SUPPORT VOLUNTEERS ACROSS THE US AND CANADA. IN A FIRST INITIATIVE 12 VOLUNTEERS VISITED 41 CARE FACILITIES IN FOUR DIFFERENT US REGIONS TO EDUCATE PROFESSIONAL STAFF ABOUT FTD AND HOW BEST TO MEET THESE CLIENTS NEEDS. 947819 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 11 0 1 8 1 0 0 0 0 0 0 0 0 0 0 X 17 17 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 SUSAN EISSLER MBA 1.00 X X 0 0 0 JARY LARSEN PHD 1.00 X X 0 0 0 BRYAN DALESANDRO 1.00 X X 0 0 0 DEBBIE FENOGLIO 1.00 X X 0 0 0 HELEN-ANN COMSTOCK 1.00 X 0 0 0 DEANNA ANGELO MBA 1.00 X 0 0 0 EARL COMSTOCK ESQ 1.00 X 0 0 0 AMY KAMIN 1.00 X 0 0 0 EMILY LEVY MBA 1.00 X 0 0 0 SYLVIA MACKEY 1.00 X 0 0 0 LINDA NEE 1.00 X 0 0 0 LISA RADIN 1.00 X 0 0 0 POP SHENIAN 1.00 X 0 0 0 BONNIE SHEPHERD 1.00 X 0 0 0 JOHN WHITMARSH PHD 1.00 X 0 0 0 BETH WALTER 1.00 X 0 0 0 FRANCINE LADEN SCD 1.00 X 0 0 0 SUSAN DICKINSON 40.00 X 92291 0 2769 92291 0 2769 0 0 0 0 0 62755 1167951 272177 1230706 2810 2810 8940 62755 16020 -7080 -7080 BOOK & DVD SALES 451211 4774 4774 4774 1231210 4774 0 -4270 210000 210000 54281 54281 95060 67373 18458 9229 394344 305468 10087 78789 4624 4624 12701 7918 1130 3653 45683 34930 2541 8212 14065 14065 48872 36359 7218 5295 6000 6000 43287 31054 3545 8688 47868 33508 7180 7180 8690 6868 1796 26 88109 85687 2422 3336 3336 5387 3771 808 808 WEBSITE 26353 26353 POSTAGE 14813 10696 1201 2916 TELEPHONE 13166 9216 1975 1975 SUPPLIES 10848 8511 1203 1134 14470 5202 1755 7513 1161957 947819 76298 137840 15000 15000 1158122 1184850 4658 22032 18641 6308 8526 12333 4155 4155 1190461 1238370 22089 5745 60000 55000 82089 60745 X 951633 985684 156739 191941 1108372 1177625 1190461 1238370 69253 0 X X 0 1 X 1 0 X 810148 715649 1153120 1473492 1230706 5383115 810148 715649 1153120 1473492 1230706 5383115 1121716 4261399 10398 11473 5709 6491 2810 36881 5419996 23501 0.78620 0.68550 X SCHEDULE A, PART IV, SUPPLEMENTAL INFORMATION: EFFECTIVE JUNE 30, 2012, THE ORGANIZATION ELECTED TO CHANGE ITS FISCAL YEAR END TO JUNE 30. THE PUBLIC SUPPORT INFORMATION REPORTED IN PART II SECTION A IS FOR THE 2008, 2009 AND 2010 CALENDAR YEARS. 2011 INCLUDES BOTH CALENDAR YEAR 2011 AND THE SHORT TAX PERIOD JANUARY 1, 2012 THROUGH JUNE 30, 2012. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1300 1300 1160657 1161957 191196 47799 0 0 478083 191196 669279 1003919 700 1300 2000 47799 47799 71699 18641 6308 12333 12333 X 1245939 16020 16020 1229919 1291 1291 1231210 1176686 16020 16020 1160666 1291 1291 1161957 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: 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 2009, 2010 AND 2011 IS SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THE TAX RETURNS WERE FILED. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSE 16,020. PART XI, LINE 4B - OTHER ADJUSTMENTS: BROKER FEES 1,291. PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 16,020. PART XII, LINE 4B - OTHER ADJUSTMENTS: BROKER FEES 1,291. CARE & CURE EVENT 71695 62755 8940 40 6482 4778 4720 71695 62755 8940 40 6482 4778 4720 16020 -7080 1 ALZHEIMER DRUG DISCOVERY FOUNDATION 57 W 57TH STREET STE 10019 NEW YORK NY 10019 201082179 501(C)(3) 100000 DRUG DISCOVERY MASSACHUSETTS GENERAL HOSPITAL 185 CAMBRIDGE ST 5400 BOSTON MA 02114 042697983 501(C)(3) 110000 RESEARCH RESPITE CARE AND TRAVEL GRANTS 90 54281 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, 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 6 272177 DAILY AVG. MARKET VALUE 0 1 0 THIRD PARTY USE: PART I, LINE 32B: AFTD RETAINS THE SERVICES OF PRIME CETERA INVESTMENT SERVICES TO SELL SHARES OF SECURITIES RECEIVED AS CONTRIBUTIONS. FORM 990 PART I LINES 8 THROUGH 22 THE PRIOR YEAR AMOUNTS WERE FOR THE SIX-MONTHS ENDED JUNE 30, 2012. 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 2013 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 BOARD CHAIR SOLICITED INPUT FROM AFTD OFFICERS AND COMMITTEE CHAIRS. THIS INPUT, ALONG WITH SALARY COMPARABILITY DATA, WAS REVIEWED BY THE EXECUTIVE COMMITTEE, WHO APPROVED THE EXECUTIVE DIRECTOR'S REVIEW AND COMPENSATION ADJUSTMENT. 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.