2018-09-28T08:08:11-05:00 2017-12-31 521392008 GELMAN ROSENBERG & FREEDMAN 4550 MONTGOMERY AVE SUITE 650N BETHESDA MD 208142930 990 2017-01-01 521336903 APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATION INC APLA 3012797202 4330 EAST WEST HIGHWAY NO 230 BETHESDA MD 20814 KATHLEEN WEIS CEO 3012797202 2018-09-28 1 3019519090 75.103.231.202 2018-09-28 09:08:06 ED P 4FA38BE9C690C82C721A5060F87FC7588CB81F81 30DEBE96A666B77FDF6485797CE4D1D3F8E4BD42 2017 2018-06-14 16:35:46Z X KATHLEEN WEIS 4330 EAST WEST HIGHWAY NO 230 BETHESDA MD 20814 8215270 0 X WWW.AAMDS.ORG X 1983 MD SEE PART III, LINE 1. 11 11 23 260 0 0 6294712 5316382 62389 31135 71536 108072 -30496 -35504 6398141 5420085 2803709 2468975 0 0 1752789 1904384 0 0 550860 2222739 2075260 6779237 6448619 -381096 -1028534 5638642 5908201 1155792 2329240 4482850 3578961 TO SUPPORT PATIENTS, FAMILIES AND CAREGIVERS COPING WITH APLASTIC ANEMIA, MDS, PNH AND RELATED BONE MARROW FAILURE DISEASES BY PROVIDING ANSWERS, SUPPORT AND HOPE. 0 0 5678232 2468975 31135 PROVIDED PATIENT EDUCATION MATERIALS AND PROGRAMS REGARDING DIAGNOSIS, TREATMENT AND LIVING WITH BONE MARROW FAILURE DISEASES; PROVIDED PEER SUPPORT THROUGH A NETWORK OF VOLUNTEERS; BUILD AWARENESS AND KNOWLEDGE OF BONE MARROW FAILURE DISEASES AMONG HEALTH PROFESSIONALS AND THE PUBLIC; RAISED PUBLIC AND PRIVATE SUPPORT TO FUND RESEARCH TO IMPROVE PATIENT TREATMENT AND FIND A CURE FOR BONE MARROW FAILURE DISEASES. 5678232 1 1 0 1 0 0 0 0 0 0 1 0 0 1 1 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 1 81 0 1 23 1 0 0 0 0 0 1 1 0 0 0 0 X 11 11 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CA MD NY X X KATHLEEN WEIS 3012797202 4330 EAST WEST HIGHWAY SUITE 230 BETHESDA MD 20814 KEVIN LYONS-TARR CHAIR 2.00 X X 0 0 0 HARSHA MURTHY VICE CHAIR 1.00 X X 0 0 0 STEPHEN KING SECRETARY 1.00 X X 0 0 0 TONY SAN FILIPPO TREASURER 1.00 X X 0 0 0 JUDY PAULETTE DIRECTOR 1.00 X 0 0 0 STEPHANIE DILLON HAMM DIRECTOR 1.00 X 0 0 0 DEBORAH COOK DIRECTOR 1.00 X 0 0 0 JAMES GAJEWSKI DIRECTOR 1.00 X 0 0 0 BART FISHER DIRECTOR 1.00 X 0 0 0 NEIL HORIKOSHI DIRECTOR 1.00 X 0 0 0 MELANIE MARQUEZ DIRECTOR 1.00 X 0 0 0 KATHLEEN WEIS CEO 40.00 X 224613 0 19316 SERAP AKISOGLU CHIEF DEVELOPMENT OFFICER 40.00 X 127912 0 19754 ELLEN SALKELD SR. DIR. RESEARCH/HEALTH PROF. PROGRM 40.00 X 105976 0 7885 BARBARA HOLZER SR. DIR., COMMUNICATIONS/OUTREACH 40.00 X 103474 0 18416 PAUL SCRIBNER SENIOR DIR., PATIENT ADVOCACY 40.00 X 108937 0 15180 670912 0 80551 5 0 1 0 CALIBRE CPA GROUP 7501 WISCONSIN AVENUE BETHESDA MD 20814 PROFESSIONAL SERVICES 174020 1 29352 293835 4993195 261319 5316382 CONFERENCE 900099 31135 31135 31135 57996 57996 2778623 2728547 50076 50076 50076 31134 293835 66638 -35504 -35504 5420085 31135 0 72568 2343975 2343975 5000 5000 120000 120000 243928 182947 41467 19514 1360436 964343 81440 314653 64039 45381 3801 14857 122263 87082 8434 26747 113718 81272 8582 23864 3280 3006 95 179 207685 190364 6002 11319 82500 82500 13308 10341 1454 1513 448529 416374 15730 16425 239841 177272 5212 57357 143779 114760 16459 12560 182814 145265 21804 15745 171276 159790 381 11105 390934 380106 906 9922 38602 30673 4604 3325 17543 13940 2092 1511 HONORARIA 98300 97437 863 DUES & SUBSCRIPTIONS 27986 20719 605 6662 PROF. DEVELOPMENT 8883 5685 459 2739 6448619 5678232 219527 550860 452703 398232 1128710 430996 243095 337517 409795 809106 310711 87086 386951 276680 122441 110271 2680166 3438609 291021 296384 5638642 5908201 364233 471048 748620 1745994 42939 112198 1155792 2329240 X 454049 -49330 4028801 3628291 4482850 3578961 5638642 5908201 X -1028534 124645 0 X 0 1 X 1 0 X 7360504 7394694 5277766 6294712 5316382 31644058 7360504 7394694 5277766 6294712 5316382 31644058 21531986 10112072 146346 176581 165316 82617 57996 628856 32272914 174668 0.31330 0.30320 X AAMDS QUALIFIES AS A PUBLIC CHARITY UNDER THE "FACTS AND CIRCUMSTANCES" TEST OF 1.170A-9(F)(3) OF THE TREASURY REGULATIONS, BASED UPON THE FOLLOWING:ITS SUPPORT, AS REPORTED FOR 2017, IS 31.33%, THEREBY MEETING THE REQUIREMENT OF 1.170A-9(F)(3)(I).AAMDS IS ORGANIZED AND OPERATED SO AS TO ATTRACT NEW AND ADDITIONAL FUNDING ON A CONTINUOUS BASIS, THEREBY MEETING THE REQUIREMENT OF 1.170A-9(F)(3)(II). AAMDS HAS RECENTLY UNDERTAKEN NEW DEVELOPMENT EFFORTS TO BROADEN AAMDS' BASE OF SUPPORT.AAMDS' PUBLIC SUPPORT, AT 31.33%, IS WELL ABOVE THE 10% MINIMUM REQUIRED FOR THE "FACTS AND CIRCUMSTANCES" TEST, THEREBY MEETING THE REQUIREMENT OF 1.170A-9(F)(3)(III). IN MEETING THE REQUIREMENT OF 1.170A-9(F)(3)(I), AAMDS HAS RECEIVED SUPPORT FROM A REPRESENTATIVE NUMBER OF ORGANIZATIONS, RATHER THAN RECEIVING ALL OR MOST OF ITS SUPPORT FROM A SINGLE ORGANIZATION, OR FROM A SINGLE DONOR. IN FACT, AAMDS HAS RECEIVED FINANCIAL SUPPORT FROM A NUMBER OF INDIVIDUAL DONORS, IN ADDITION TO GRANTS RECEIVED FROM A NUMBER OF DIFFERENT ORGANIZATIONS. AAMDS' CURRENT FUNDRAISING PLANS ARE TARGETED AT A BROAD BASE OF DONORS. IN THIS RESPECT, AAMDS MEETS THE REQUIREMENT OF 1.170A-9(F)(3)(III)(B).AAMDS REMAINS AN ORGANIZATION COMMITTED TO SERVING THE PUBLIC THROUGH ITS WORK. AAMDS WAS FORMED TO SUPPORT PATIENTS, FAMILIES AND CAREGIVERS COPING WITH APLASTIC ANEMIA, MDS, PNH AND RELATED BONE MARROW FAILURE DISEASES BY PROVIDING ANSWERS, SUPPORT AND HOPE. IN THIS MANNER, AAMDS MEETS THE REQUIREMENT OF 1.170A-9(F)(3)(III)(D). 0 82500 82500 6366119 6448619 472431 118108 0 0 527108 481016 488962 472431 1969517 2954276 82500 82500 131777 120254 122241 118108 492380 738570 386951 276680 110271 110271 SECURITY DEPOSITS 15232 CHARITABLE REMAINDER TRUST 281152 296384 DEFERRED RENT 112198 112198 X 5630076 124645 18708 66638 209991 5420085 0 5420085 6533965 18708 66638 85346 6448619 0 6448619 PART X, LINE 2: FOR THE YEAR ENDED DECEMBER 31, 2017, THE FOUNDATION HAS DOCUMENTED ITS CONSIDERATION OF FASB ASC 740-10, INCOME TAXES, THAT PROVIDES GUIDANCE FOR REPORTING UNCERTAINTY IN INCOME TAXES AND HAS DETERMINED THAT NO MATERIAL UNCERTAIN TAX POSITIONS QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES REPORTED AS EXPENSE ON THE FINANCIAL 66,638. STATEMENTS AND NETTED AGAINST REVENUE ON FORM 990, PART VIII, LINE 8C. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES REPORTED AS EXPENSE ON THE FINANCIAL 66,638. STATEMENTS AND NETTED AGAINST REVENUE ON FORM 990, PART VIII, LINE 8C. 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 78750 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 18750 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 22500 0 0 0 0 0 0 120000 0 120000 EUROPE RESEARCH 18750 WIRE TRANSFER EUROPE RESEARCH 15000 CHECK EUROPE RESEARCH 15000 CHECK EUROPE RESEARCH 30000 WIRE TRANSFER EAST ASIA AND THE PACIFIC RESEARCH 22500 CHECK SOUTH AMERICA RESEARCH 18750 CHECK 6 0 1 0 0 0 0 0 PART I, LINE 2: AS WITH ALL OF OUR TWO-YEAR RESEARCH GRANTS, PROGRESS REPORTS ARE REQUIRED TO BE SUBMITTED AFTER THE FIRST YEAR AND A FINAL REPORT IS REQUIRED AT THE CONCLUSION OF THE SECOND YEAR. THESE REPORTS ARE REVIEWED AND APPROVED BY OUR MEDICAL ADVISORY BOARD. SECOND YEAR FUNDING IS CONTINGENT UPON SUBMISSION OF THE FIRST YEAR PROGRESS REPORT AND INDICATION OF FIRST YEAR PROGRESS IN MEETING THE OBJECTIVES OF THE STUDY. PNH BREAKF. & WALK 36493 32533 3960 1203 2930 3240 4501 OTHER WALKS 288476 261302 27174 14743 1793 1268 36960 324969 293835 31134 15946 4723 4508 41461 66638 -35504 1 ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVE ALBANY NY 12208 141338310 501(C)(3) 30000 RESEARCH ALBERT EINSTEIN COLLEGE OF MEDICINE INC 1300 MORRIS PARK AVE BELFER 312 BRONX NY 10461 131624225 501(C)(3) 44721 RESEARCH BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741159753 501(C)(3) 15000 RESEARCH CHILDRENS HOSPITAL OF PHILIDELPHIA 3615 CIVIC CENTER BLVD PHILIDELPHI PA 19104 231352166 501(C)(3) 15000 RESEARCH CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVE CLEVELAND OH 44195 340714585 501(C)(3) 15000 RESEARCH DANA FARBER CANCER INSTITUTE 450 BROOKLINE AVENUE BOSTON MA 02215 042263040 501(C)(3) 15000 RESEARCH MEMORIAL SLOAN-KETTERING CANCER CENTER 1275 YORK AVENUE BOX 701 NEW YORK NY 10065 131924236 501(C)(3) 30000 RESEARCH NIH CLINICAL CENTER NIHCC BETHESDA MD 20892 520858115 501(C)(3) 30000 RESEARCH RHODE ISLAND HOSPITAL 1 HOPPIN ST PROVIDENCE RI 02903 500258954 501(C)(3) 15000 RESEARCH UNIVERSITY OF SOUTH CAROLINA 715 SUMTER ST COLUMBIA SC 29208 576001153 501(C)(3) 7500 RESEARCH THE U OF TEXAS MD ANDERSON CANCER CENTER PO BOX 301402 UNIT 1431 HOUSTON TX 77230 760449960 501(C)(3) 536452 RESEARCH H LEE MOFFITT CANCER CENTER & RESEARCH INSTITUTE PO BOX 742801 ATLANTA GA 30374 592451713 501(C)(3) 306340 RESEARCH WEILL CORNELL MEDICAL COLLEGE 525 EAST 68TH STREET NEW YORK NY 10065 133376695 501(C)(3) 271449 RESEARCH CLEVELAND CLINIC PO BOX 931568 ATTN165368173501 CLEVELAND OH 44193 340714585 501(C)(3) 369349 RESEARCH JOHNS HOPKINS UNIVERSITY 12529 COLLECTIONS CENTER DR CHICAGO IL 60693 520595110 501(C)(3) 341500 RESEARCH DANA FARBER CANCER INSTITUTE 450 BROOKLINE AVENUE BOSTON MA 02215 042263040 501(C)(3) 283150 RESEARCH 16 0 SUMMER FELLOWSHIP 1 5000 PART I, LINE 2: AS WITH ALL OF OUR TWO-YEAR RESEARCH GRANTS, PROGRESS REPORTS ARE REQUIRED TO BE SUBMITTED AFTER THE FIRST YEAR AND A FINAL REPORT IS REQUIRED AT THE CONCLUSION OF THE SECOND YEAR. THESE REPORTS ARE REVIEWED AND APPROVED BY OUR MEDICAL ADVISORY BOARD. SECOND YEAR FUNDING IS CONTINGENT UPON SUBMISSION OF THE FIRST YEAR PROGRESS REPORT AND INDICATION OF FIRST YEAR PROGRESS IN MEETING THE OBJECTIVES OF THE STUDY. X X X 0 0 0 0 0 0 0 1 0 KATHLEEN WEIS CEO 186613 0 38000 0 0 0 10925 0 8391 0 243929 0 0 0 PART I, LINE 7 THE ORGANIZATION PAID K. WEIS $38,000 IN BONUS COMPENSATION DURING THE YEAR. SUBSTANTIAL CONTRIBUTOR SUBSTANTIAL CONTRIBUTOR 174020 AAMDS PAID A SUBSTANTIAL CONTRIBUTOR FEES FOR PROFESSIONAL SERVICES PROVIDED. 0 X 3 261319 FMV 0 0 1 0 PART I, COLUMN (B): THIS COLUMN REPRESENTS THE NUMBER OF CONTRIBUTIONS. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 WAS PREPARED BY THE OUTSIDE ACCOUNTANTS AND REVIEWED BY THE AUDIT COMMITTEE. A FINAL COPY WAS DISTRIBUTED TO THE ENTIRE BOARD OF DIRECTORS PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C BEFORE ANY CONTRACTS FOR THE PURCHASE OF GOODS OR SERVICES ARE AWARDED, MANAGEMENT AND STAFF REVIEW THEM FOR ANY POTENTIAL, PERCEIVED AND/OR REAL CONFLICTS OF INTEREST WITH RESPECT TO BOARD MEMBERS, KEY VOLUNTEERS OR STAFF. IN THE EVENT OF CONFLICT OF INTEREST, THE MATTER IS REFERRED TO THE EXECUTIVE COMMITTEE OF THE BOARD FOR DISCUSSION AND RESOLUTION. NO SUCH CONFLICTS OCCURRED IN 2017. FORM 990, PART VI, SECTION B, LINE 15A THE CEO'S PERFORMANCE & COMPENSATION IS REVIEWED BY THE EXECUTIVE COMMITTEE USING COMPENSATION STUDIES PUBLISHED BY ASAE, BOARD SOURCE & OTHERS FOR COMPARITIVE DATA. THE EXECUTIVE DIRECTOR'S SALARY IS APPROVED BY THE EXECUTIVE COMMITTEE WHICH THEN INFORMS THE BOARD. THIS ENTIRE PROCESS IS DOCUMENTED. SALARIES OF ALL STAFF ARE REVIEWED ANNUALLY BY THE EXECUTIVE DIRECTOR USING COMPENSATION SURVEY DATA FOR COMPARABLE SIZE AND TYPE ORGANIZATIONS. THE LAST SALARY REVIEW DATE FOR THE EXECUTIVE DIRECTOR WAS AUGUST 2017. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC IN PRINT AND/OR ELECTRONIC FORM UPON REQUEST, AT NO COST. FORM 990, PART XI, LINE 10: DURING THE YEARS 2012-2014, APLASTIC ANEMIA AND MDS INTERNATIONAL FOUNDATION RECEIVED SIGNIFICANT FUNDING FOR MULTI-YEAR PROGRAM SUPPORT AND RESEARCH GRANTS. THE FOUNDATION'S POLICY, WHICH IS IN ACCORDANCE WITH GENERALLY ACCEPTED ACCOUNTING POLICIES, IS TO RECOGNIZE TEMPORARILY RESTRICTED REVENUE IN THE YEAR IN WHICH THE FUNDS WERE COMMITTED AND TO RECORD EXPENSES AND RELEASE RESTRICTIONS IN THE YEAR IN WHICH THE FUNDS ARE SPENT. THE TIMING RESULTED IN NET INCOME FOR THE YEARS 2012-2014 AND A NET LOSS FOR 2015, 2016 AND 2017.