2013-06-12T10:21:18-05:00 2012-12-31 521511275 RAFFA PC 1899 L STREET NW SUITE 900 WASHINGTON DC 20036 990 2012-01-01 581342181 SPINA BIFIDA ASSOCIATION OF AMERICA SPIN 8006213141 4590 MACARTHUR BOULEVARD NW NO 250 WASHINGTON DC 20007 CINDY BROWNSTEIN 8006213141 2013-06-12 1 FRANK H SMITH P00639053 2028225000 2013-06-12 2012 2016-02-25 16:41:14Z CINDY BROWNSTEIN 4590 MACARTHUR BOULEVARD NW NO 250 WASHINGTON DC 20007 3304693 0 X WWW.SBAA.ORG X 1973 WI TO PROMOTE THE PREVENTION OF SPINA BIFIDA AND ENHANCE THE LIVES OF ALL AFFECTED. 11 11 0 88 34621 -2000 2988311 2389800 416939 670679 9569 10630 8484 2123 3423303 3073232 219750 56563 0 0 1309004 1633176 0 0 538326 1608579 1613036 3137333 3302775 285970 -229543 2161421 1849083 289920 215971 1871501 1633112 X TO PROVIDE INFORMATION RELATED TO THE BIRTH DEFECT OF SPINA BIFIDA AND ITS RELATED CONDITIONS, INCLUDING THE AREAS OF MEDICINE, EDUCATION, LEGISLATION AND FINANCIAL SUPPORT; TO HELP FUND RESEARCH INTO THE CAUSES, EFFECTS AND TREATMENT OF SPINA BIFIDA; TO ENCOURAGE THE TRAINING OF PROFESSIONALS INVOLVED IN THE TREATMENT OF SPINA BIFIDA. 0 0 645851 AWARENESS CAMPAIGN: THE SPINA BIFIDA ASSOCIATION'S AWARENESS CAMPAIGN FOCUSES ON INFORMING COMMUNITIES ACROSS THE COUNTRY ABOUT SPINA BIFIDA, ITS IMPACT ON INDIVIDUALS AND FAMILIES, AND HOW TAKING THE B-VITAMIN FOLIC ACID EVERY DAY CAN HELP REDUCE THE RISK. PRESENTATIONS AND MEDIA OUTREACH EFFORTS REACHED OVER 10.5 MILLION PEOPLE. 347180 613 340034 NATIONAL CONFERENCE: EACH YEAR, THE SPINA BIFIDA ASSOCIATION HOLDS AN ANNUAL CONFERENCE THAT BRINGS LEADERS IN THE DISCIPLINES OF UROLOGY, ORTHOPEDICS, NEUROSURGERY AND NEUROLOGY, PSYCHOLOGY, PEDIATRICS, EDUCATION AND CHILDHOOD DEVELOPMENT TO PROVIDE THE MOST UP-TO-DATE INFORMATION TO ADULTS LIVING WITH SPINA BIFIDA AND PARENTS OF CHILDREN AND ADOLESCENTS ALIKE. OVER 700 PEOPLE FROM OVER 40 STATES PARTICIPATED IN THE CONFERENCE. 331123 5802 275607 SECOND WORLD CONGRESS: THE SPINA BIFIDA ASSOCIATION CONVENED THE SECOND WORLD CONGRESS ON SPINA BIFIDA RESEARCH AND CARE TO BRING TOGETHER THE INTERNATIONAL LEADERS IN THE MEDICAL AND SCIENTIFIC COMMUNITY FROM THE FIELDS OF NEUROSURGERY, NEUROLOGY, UROLOGY, DEVELOPMENTAL PEDIATRICS, ORTHOPEDICS, EPIDEMIOLOGY, AND OTHER ARENAS FOR THE FIRST TIME TO DISCUSS THE FUTURE OF CARE FOR PEOPLE WITH SPINA BIFIDA. THIS INTERNATIONAL EVENT BROUGHT TOGETHER OVER 384 CLINICIANS, MEDICAL PROFESSIONALS, AND RESEARCHERS, AND THE WORK OF OVER 171 SCIENTISTS WAS PRESENTED. 326518 350 CHAPTER DEVELOPMENT: THE SPINA BIFIDA ASSOCIATION PROMOTES THE GROWTH AND DEVELOPMENT OF ITS 24 CHAPTERS THROUGH TECHNICAL ASSISTANCE TO ASSIST THEM IN CAPACITY BUILDING, COMMUNICATIONS, PROGRAMMATIC RESOURCES AND GRANTS. 245081 NATIONAL RESOURCE CENTER: THE SPINA BIFIDA ASSOCIATION'S NATIONAL RESOURCE CENTER ON SPINA BIFIDA PROVIDES HIGH QUALITY, CONFIDENTIAL INFORMATION AND REFERRAL SERVICES. THE NATIONAL RESOURCE CENTER PROVIDES FAMILIES AND INDIVIDUALS WITH CRITICAL INFORMATION AT A TIME OF GREAT NEED AND IS THE ONLY CLEARINGHOUSE OF INFORMATION EXCLUSIVELY DEDICATED TO SPINA BIFIDA. THE CENTER RESPONDS TO APPROXIMATELY 15,000 PEOPLE NATIONWIDE WITH ANSWERS TO QUESTIONS ABOUT HEALTH CARE, EDUCATION, EMPLOYMENT, PREVENTION, AND AGING WITH SPINA BIFIDA. OVER 100,000 PEOPLE ACCESS THE CENTER'S INFORMATION ON THE SBA WEB SITE. 227538 298 20417 EDUCATION PROGRAMS: THE SPINA BIFIDA ASSOCIATION'S EDUCATION PROGRAMS PROVIDE PARENTS, CAREGIVERS AND PERSONS LIVING WITH SPINA BIFIDA WITH TOOLS AND RESOURCES AT CRITICAL POINTS IN DEVELOPMENT AND TRANSITION. EDUCATION AND INFORMATIONAL RESOURCES WERE PROVIDED TO OVER 4,900 PEOPLE WITH SPINA BIFIDA, PARENTS, AND CAREGIVERS. 202684 ADVOCACY PROGRAM: THE SPINA BIFIDA ASSOCIATION'S ADVOCACY PROGRAM IS A MULTI-PRONG APPROACH THAT INCLUDES GRASS TOPS/GRASSROOTS VISITS. OVER 100 IN-PERSON VISITS TO MEMBERS OF CONGRESS, FEDERAL OFFICIALS AND AGENCIES WERE MADE. GRASSROOTS POST CARDS, LETTERS AND E-MAILS IN EXCESS OF 2,000 WERE DELIVERED ON BEHALF OF PEOPLE LIVING WITH SPINA BIFIDA. 180741 37500 RESEARCH: THE SPINA BIFIDA ASSOCIATION'S YOUNG INVESTIGATORS PROGRAM WAS ESTABLISHED TO ATTRACT TALENTED YOUNG RESEARCHERS TO THE FIELD OF SPINA BIFIDA. 11629 12000 SCHOLARSHIPS: THE SPINA BIFIDA ASSOCIATION PROVIDES YOUNG PEOPLE WITH SPINA BIFIDA SCHOLARSHIPS TO POST-SECONDARY EDUCATIONAL INSTITUTIONS TO HELP THEM ACHIEVE SUCCESS AND INDEPENDENCE. 1008 REGIONAL EDUCATION DAY: THE SPINA BIFIDA ASSOCIATION HELD ITS FIRST REGIONAL EDUCATION DAY THAT BROUGHT LEADERS IN THE DISCIPLINES OF UROLOGY, ORTHOPEDICS, NEUROSURGERY AND NEUROLOGY, PSYCHOLOGY, PEDIATRICS, EDUCATION AND CHILDHOOD DEVELOPMENT TO PROVIDE THE MOST UP-TO-DATE INFORMATION TO ADULTS LIVING WITH SPINA BIFIDA AND PARENTS OF CHILDREN AND ADOLESCENTS ALIKE. OVER 187 PEOPLE FROM 3 STATES PARTICIPATED IN THE FIRST REGIONAL EDUCATION DAY. 1195199 50148 20417 2519353 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 17 0 1 0 1 1 0 0 0 0 0 0 0 0 0 X 11 11 0 0 0 0 1 1 1 1 1 0 1 1 1 1 1 1 1 1 1 0 0 AL AK AR AZ CA CO CT FL GA IL KS KY LA ME MD MA MI MN MS ND NH NJ NM NY NC OH OK OR PA RI SC TN UT VA WA WI WV X X X JOSEPH MARTIN 8006213141 4590 MACARTHUR BOULEVARD NW NO 250 WASHINGTON DC 20007 GEORGE STURM 2.00 X X 0 0 0 ANA XIMENES 1.00 X X 0 0 0 JOYCE JONES 1.00 X X 0 0 0 WILLIAM D MILLIGAN JR 1.00 X X 0 0 0 DONNA JONES 1.00 X 0 0 0 KERRI MCMAINS 1.00 X 0 0 0 WILSON NEYLAND 1.00 X 0 0 0 MEGAN SORENSEN 1.00 X 0 0 0 WILLIAM O WALKER JR MD 1.00 X 0 0 0 JULIE YINDRA 1.00 X 0 0 0 DONNA ZAHRA PHD ARNP 1.00 X 0 0 0 CINDY BROWNSTEIN 37.50 X 281870 0 18510 SARA STRUWE 37.50 X 110560 0 7061 JOSEPH MARTIN 37.50 X 105145 0 11115 CHRISTOPHER VANCE 37.50 X 109585 0 11567 607160 0 48253 4 0 1 0 MARRIOTT - INDY PO BOX 13003 MERRILLVILLE IN 46411 HOTEL & CONFERENCE CENTER 201180 MOIRE MARKETING PARTNERS 407 N WASH ST STE 102 FALLS CHURCH VA 22046 DESIGN, PRINTING, & MAILING SERVICES 186502 THE COSMOPOLITAN OF LAS VEGAS 3708 LAS VEGAS BLVD SOUTH LAS VEGAS NV 89173 HOTEL & CONFERENCE CENTER 159763 DRINKER BIDDLE & REATH LLP 1 LOGAN SQ STE 2000 PHILADELPHIA PA 191036996 GOVERNMENT RELATIONS 100039 4 92542 1151223 1146035 2389800 CONFERENCE AND MEETING 900099 615641 615641 ADVERTISING 541800 34621 34621 PUBLICATIONS 900099 20417 20417 670679 16208 16208 225883 231461 -5578 -5578 -5578 MISCELLANEOUS 900099 2123 2123 2123 3073232 636058 34621 12753 X 37500 37500 19063 19063 534262 430260 80152 23850 905061 588742 39115 277204 18397 10613 224 7560 105726 69773 7056 28897 69730 47744 5806 16180 57991 39972 5152 12867 52831 39857 4580 8394 91773 91773 4314 4314 360891 342475 14583 3833 332895 176371 83198 73326 37 37 127254 49705 50806 26743 163857 130996 12498 20363 355290 322677 10770 21843 13963 13963 UBI TAXES 3622 3622 STATE FILING FEES 27622 11870 7692 8060 TEMPORARY HELP 12008 3856 8152 MISCELLANEOUS 7068 1283 4731 1054 1620 104786 -103166 3302775 2519353 245096 538326 159690 276086 520983 383074 769025 449955 24262 48583 55092 28177 209204 171507 42189 37697 590180 625511 2161421 1849083 168410 144868 116602 71103 4908 0 289920 215971 X 963534 926780 553181 646332 354786 60000 1871501 1633112 2161421 1849083 -229543 -8846 0 X 0 1 X 1 1 1 X 3014228 2490586 2465740 2988311 2389800 13348665 3014228 2490586 2465740 2988311 2389800 13348665 21359 13327306 9272 13745 19206 8844 16208 67275 20270 16814 11931 49015 16453 704 1443 8484 2123 29207 13494162 2791843 0.98760 0.98610 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 50910 152729 203639 3093130 3296769 314838 78710 0 0 304330 289860 306641 314838 1215669 1823504 184555 131713 179294 203639 699201 76083 72465 76660 78710 303918 455877 46139 32928 44824 50910 174801 354196 -94 294786 59316 99786 255000 -590 354196 61252 39786 1122 2374 99786 10250 50000 1002 61252 10000 250 10250 0.00000 1.00000 0.00000 0 0 142606 113452 29154 66598 58055 8543 37697 X 3118825 -8846 58753 49907 3068918 4314 4314 3073232 3357214 58753 58753 3298461 4314 4314 3302775 DESCRIPTION OF INTENDED USE OF ENDOWMENT FUNDS: PART V, LINE 4: TO FUND SCHOLARSHIPS FOR PEOPLE WITH SPINA BIFIDA AND GRANT TO PROMOTE THE PREVENTION AND CURE OF SPINA BIFIDA AND TO IMPROVE THE LIVES OF THOSE LIVING WITH SPINA BIFIDA. DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: THE ASSOCIATION PERFORMED AN EVALUATION OF ITS UNCERTAIN TAX POSITIONS FOR THE YEAR ENDED DECEMBER 31, 2012, AND DETERMINED THAT THERE WERE NO MATTERS THAT WOULD REQUIRE RECOGNITION IN THE FINANCIAL STATEMENTS OR THAT MAY HAVE ANY EFFECT ON ITS TAX-EXEMPT STATUS. 1 CHILDREN'S HOSPITAL OF LA 4650 SUNSET BOULEVARD MAIL STOP 97 LOS ANGELES CA 90027 951690977 501(C)(3) 37500 SPINA BIFIDA EMR PILOT AWARD 1 0 SCHOLARSHIPS 9 16000 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, PART I, LINE 2: THE ASSOCIATION PERFORMS A FINANCIAL AND PROGRAM REVIEW FOR EACH GRANT DISBURSEMENT. X X X X X 0 0 0 0 0 0 0 0 0 CINDY BROWNSTEIN 281870 0 0 0 0 0 10000 0 8510 0 300380 0 0 0 FORM 990, PART VI, SECTION A, LINE 6 EACH CHAPTER OF THE SBA WHICH MEETS THE AFFILIATION STANDARDS OF THE ORGANIZATION AND IS IN GOOD STANDING AT THE TIME OF EACH RELEVANT MEETING SHALL BE A MEMBER. FORM 990, PART VI, SECTION A, LINE 7A DELEGATES ARE APPOINTED BY EACH CHAPTER. THESE DELEGATES APPROVE THE NEW MEMBERS OF THE BOARD OF DIRECTORS AND THE SLATE OF OFFICERS OF THE BOARD. FORM 990, PART VI, SECTION A, LINE 7B ANY CHANGES IN THE ORGANIZATION'S BY-LAWS ARE REQUIRED TO BE APPROVED BY A MAJORITY OF THE CHAPTER DELEGATES PRESENT AT THE ANNUAL BOARD MEETING. FORM 990, PART VI, SECTION B, LINE 11 THE FEDERAL FORM 990 IS REVIEWED BY THE CONTROLLER, CHIEF OPERATING OFFICER, AND CHIEF EXECUTIVE OFFICER AND THEN IS GIVEN TO THE AUDIT COMMITTEE FOR REVIEW, DISCUSSION AND APPROVAL. A COPY OF THE FEDERAL FORM 990 IS PROVIDED TO THE ENTIRE BOARD OF DIRECTORS PRIOR TO FILING WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C ANNUAL WRITTEN CONFIRMATION IS REQUIRED FROM ALL BOARD MEMBERS WHO IDENTIFY ALL POTENTIAL CONFLICTS OF INTEREST. THE CONFIRMATION FORM STATES THAT BOARD MEMBERS FOR WHOM THERE IS A CONFLICT ON A GIVEN ISSUE WILL NOT BE INVOLVED IN ANY DISCUSSIONS NOR VOTES ON AREAS OF CONFLICT. THE ANNUAL CONFLICT OF INTEREST (COI) STATEMENTS ARE REVIEWED BY THE BOARD CHAIR AND THE CEO AND, IF ANY COI ITEMS ARE IDENTIFIED THEY WILL BE BROUGHT THE BOARD FOR REVIEW. IN ADDITION, BOARD MEMBERS ARE EXPECTED TO IDENTIFY ANY POTENTIAL CONFLICTS THAT MAY ARISE THROUGHOUT THE YEAR AND AFTER THE COI STATEMENTS ARE SIGNED. FORM 990, PART VI, SECTION B, LINE 15A THERE IS A FORMAL REVIEW OF THE CHIEF EXECTIVE OFFICER (CEO) BY THE BOARD. A FORMAL REVIEW IS MADE BY THE CEO OF ALL OTHER EMPLOYEES. THE BOARD EMPLOYS A COMBINATION OF PERFORMANCE EVALUATION AND REVIEWS BOTH LOCAL AND NATIONAL COMPENSATION SURVEYS TO ESTABLISH THE COMPENSATION OF THE CHIEF EXECUTIVE OFFICER. SIMILARLY, THE CHIEF EXECUTIVE OFFICER EMPLOYS PERFORMANCE REVIEWS AND DOCUMENTATION ON REGIONAL COMPENSATION STUDIES TO REVIEW ALL STAFF INCLUDING THE CHIEF OPERATING OFFICER AND CONTROLLER. ALL STAFF PERFORMANCE REVIEWS AND COMPENSATION CHANGES ARE PRESENTED TO THE CEO PRIOR TO FINALIZING FOR WRITTEN APPROVAL. FORM 990, PART VI, SECTION C, LINE 19 THE ASSOCIATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON THEIR WEBSITE. OTHER FEES FORM 990, PART IX, LINE 11G CONSULTING FEES: PROGRAM SERVICE EXPENSES 342,475. MANAGEMENT AND GENERAL EXPENSES 14,583. FUNDRAISING EXPENSES 3,833. TOTAL EXPENSES 360,891. FORM 990, PART I, LINE 5 & PART V, LINE 2A: THE ASSOCIATION HAS CONTRACTED WITH A PROFESSIONAL EMPLOYER ORGANIZATION, ADP TOTALSOURCE, TO SERVE AS THE EMPLOYER OF RECORD FOR THE ASSOCIATION'S EMPLOYEES. AS SUCH, ADP TOTALSOURCE IS RESPONSIBLE FOR TAX FILINGS RELATED TO EMPLOYEES. FOR THIS REASON, THE ASSOCIATION'S FEDERAL FORM 990 IS ACCURATE BUT APPEARS INCONSISTENT IN REPORTING EMPLOYEE COMPENSATION IN PART VII OF THE FEDERAL FORM 990 AND AT THE SAME TIME, REPORTING 0 EMPLOYEES ON PART I, LINE 5 AND PART V, LINE 2A. ADP TOTALSOURCE ISSUED 18 W-2'S IN 2011 FOR ASSOCIATION EMPLOYEES.