2012-05-09T07:50:30-05:00 2011-12-31 231518888 MAILLIE FALCONIERO & COMPANY LLP PO BOX 3068 WEST CHESTER PA 193813068 990 2011-01-01 412073220 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ASSO 2675147221 290 KING OF PRUSSIA RD BLDG 2 NO 320 RADNOR PA 19087 BRYAN DALESANDRO 2675147221 2012-05-03 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 2011 2016-02-24 21:20:13Z BRYAN DALESANDRO 290 KING OF PRUSSIA RD BLDG 2 NO 320 RADNOR PA 19087 1331313 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. 15 15 7 50 0 0 1153120 1019341 0 0 8516 5225 1312 10464 1162948 1035030 311083 331856 0 0 257514 367388 0 0 113513 274826 260638 843423 959882 319525 75148 1106884 1232413 54878 105259 1052006 1127154 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 402264 306000 RESEARCH:CREATED A SCIENTIFIC DIRECTOR POSITION. AWARDED $290,000 IN RESEARCH GRANTS: $110,000 FOR A TWO-YEAR POSTDOCTORAL FELLOWSHIP, $100,000 FOR BIOMARKERS RESEARCH, $60,000 FOR A PILOT GRANT; $25,000 FOR MOUSE MODEL VALIDATION. JOINED THE NIH IPSC CONSORTIUM. PARTICIPATED IN THE TRAINING SESSION FOR CLINICIANS TO ENTER PATIENT DATA IN TO THE NEW NATIONAL FTD DATABASE SPONSORED BY NIH; BROUGHT THE FTD TREATMENT STUDY GROUP, A COLLABORATIVE EFFORT BETWEEN CLINICIANS, PHARMA AND NONPROFIT ORGANIZATIONS, UNDER THE AUSPICES OF THE AFTD. THROUGH THE FTSG, CO-HOSTED TWO MEETINGS FOCUSED ON PRECINICAL AND CLINICAL CHALLENGES IN THE DEVELOPMENT OF THE FIRST THERAPIES FOR FTD. 137191 20856 SUPPORT:IN 2011, AFTD RESPONDED TO MORE THAN 1200 CALLS ON THE TOLL-FREE HELPLINE; AN ADDITIONAL 15 CAREGIVER SUPPORT GROUPS JOINED OUR NETWORK, TO BRING THE TOTAL TO 64; OVER 60 CAREGIVERS WERE MATCHED WITH INDIVIDUALS FOR INFORMAL SUPPORT. 60 RESPITE GRANTS AND 12 TRAVEL GRANTS TOTALLING MORE THAN $33,500 WERE AWARDED TO CAREGIVERS; AFTD'S TASK FORCE ON FAMILIES COMPLETED ITS REPORT ON THE UNIQUE NEEDS OF FTD FAMILIES WITH CHILDREN AND SUBMITTED AN ARTICLE FOR PUBLICATION IN A PEER-REVIEW JOURNAL. A BOOKLET FOR PARENTS WILL BE AVAILABLE IN EARLY 2012. EFFORTS HAVE BEEN STARTED TO UNDERSTAND AND ADDRESS THE SUPPORT NEEDS OF PEOPLE DIAGNOSED WITH FTD. 246913 5000 EDUCATION AND INFORMATION:MAINTAINED AND EXPANDED A WEBSITE PROVIDING INFORMATION FOR PATIENTS, FAMILIES AND CAREGIVERS; PUBLISHED THREE NEWSLETTERS AND INTRODUCED A BI-MONTHLY E-NEWSLETTER FOR CAREGIVERS. AFTD HOSTED ITS FIRST EDUCATION CONFERENCE FOR CAREGIVERS AND PROFESSIONALS IN JUNE 2011 AND SPONSORED TWO ADDITIONAL REGIONAL FTD CONFERENCES. SPONSORED TWO CME ACCREDITED PROGRAMS FOR PHYSICIAN EDUCATION: A GRAND ROUNDS TRAINING (LIVE AND ON-LINE) AND A FULL DAY WORKSHOP ON DIAGNOSIS. PUBLISHED THE RESULTS OF ORIGINAL NIH-FUNDED RESEARCH INTO OBSTACLES TO BRAIN DONATION. FORMED COMMITTEE ON LONG-TERM CARE PROFESSIONAL EDUCATION AND PRODUCED INITIAL PARTNERS IN FTD CARE TRAINING MATERIALS. PRESENTED TRAINING TO STATE ASSOCIATION OF ADULT DAY HEALTH PROVIDERS AND SEVERAL LONG-TERM CARE FACILITIES. 786368 1 1 0 0 0 0 0 0 0 1 0 0 0 0 0 0 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 0 0 0 0 0 1 7 0 1 7 1 0 0 0 0 0 0 0 0 0 0 X 15 15 1 0 1 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 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 BETH WALTER 1.00 X X 0 0 0 HELEN-ANN COMSTOCK 1.00 X 0 0 0 COLLEEN QUINN 1.00 X 0 0 0 DEBBIE FENOGLIO 1.00 X 0 0 0 AMY KAMIN 1.00 X 0 0 0 LINDA NEE 1.00 X 0 0 0 FRANCINE LADEN SCD 1.00 X X 0 0 0 SYLVIA MACKEY 1.00 X 0 0 0 LISA RADIN 1.00 X 0 0 0 EARL COMSTOCK ESQ 1.00 X 0 0 0 BRYAN DALESANDRO 1.00 X X 0 0 0 JARY LARSEN PHD 1.00 X 0 0 0 EMILY LEVY MBA 1.00 X 0 0 0 POP SHENIAN 1.00 X 0 0 0 SUSAN DICKINSON 40.00 X 83917 0 0 83917 0 0 0 0 0 0 0 1019341 296283 1019341 4566 4566 296942 296283 659 659 659 BOOK & DVD SALES 451211 10464 10464 10464 1035030 10464 0 5225 311000 311000 20856 20856 83917 56942 16783 10192 255455 193866 5026 56563 28016 20926 1904 5186 13818 13818 30739 14299 2120 14320 45111 34778 3760 6573 25121 17585 3768 3768 4456 4399 57 68412 68323 89 1487 1487 4336 2314 1526 496 WEBSITE 28702 19681 4608 4413 POSTAGE 12843 7694 1259 3890 TELEPHONE 10045 7210 1643 1192 SUPPLIES 5828 4132 861 835 9740 2363 1381 5996 959882 786368 60001 113513 72686 110873 1027799 1107631 1288 4963 8855 1981 3039 6874 2072 2072 1106884 1232413 3523 7168 51355 98091 54878 105259 X 889122 1034438 0 0 162884 92716 1052006 1127154 1106884 1232413 75148 0 X 0 0 0 X 641241 810148 715649 1153120 1019341 4339499 641241 810148 715649 1153120 1019341 4339499 1270580 3068919 4580 10398 11473 5709 4566 36726 4376225 14807 0.70130 0.68780 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 8855 1981 6874 6874 1 ALZHEIMER DRUG DISCOVERY 1414 AVENUE OF THE AMERICAS NEW YORK NY 10019 201082179 501(C)(3) 126000 DRUG DISCOVERY TAUB INSTITUTE COLUMBIA UNIVERSITY 630 W 168TH ST PO BOX 16 NEW YORK NY 10032 135598093 501(C)(3) 5000 RESEARCH MAYO CLINIC JACKSONVILLE 4500 SAN PABLO RD JACKSONVILLE FL 32224 416011702 501(C)(3) 110000 RESEARCH FOUNDATION FOR NATIONAL INSTITUTES OF HEALTH 9650 ROCKVILLE PIKE BETHESDA MD 20814 521986675 501(C)(3) 10000 RESEARCH CORNELL UNIVIERSITY PO BOX 22 ITHACA NY 148510022 150532082 501(C)(3) 60000 RESEARCH RESPITE CARE 60 19956 TRAVEL GRANTS 12 900 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, PART I, LINE 2: GRANTEES SUBMIT INTERIM (SIX MONTH) AND FINAL (TWELVE MONTH) REPORTS WITH PROGRAM AND FINANCIAL INFORMATION. X 6 296283 DAILY AVG. MARKET VALUE 0 0 1 THIRD PARTY USE: PART I, LINE 32B: AFTD RETAINS THE SERVICES OF PRIME VEST FINANCIAL SERVICES TO SELL SHARES OF SECURITIES RECEIVED AS CONTRIBUTIONS. FORM 990, PART IV, LINE 12A: AFTD IS CURRENTLY IN THE PROCESS OF SHIFTING ITS FISCAL YEAR FROM DECEMBER 31 TO JUNE 30. THEREFORE, THE FINANCIAL INFORMATION INCLUDED IN THIS TAX RETURN WILL BE AUDITED DURING THE SUMMER OF 2012 AS PART OF AN 18-MONTH AUDIT COVERING THE PERIOD OF JANUARY 1, 2011 - 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 A, LINE 4 THE ORGANIATION EXECUTED A SIGNIFICANT REVISION OF ITS BYLAWS WHICH INCLUDED MODIFICATION OF DIRECTOR TERMS. FORM 990, PART VI, SECTION B, LINE 11 THE COMPLETE 990 WAS FORWARDED TO THE BOARD OF DIRECTORS IN ADVANCE OF THE ANNUAL BOARD MEETING AND DIRECTORS WERE ADVISED THAT THEY WOULD NEED TO READ IT IN FULL. THE TREASURER AND EXECUTIVE DIRECTOR WERE AVAILABLE TO CLARIFY ANY ISSUES. DURING THE ANNUAL IN-PERSON BOARD MEETING IN APRIL 2012 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.