2023-10-03T12:52:40-05:00 2022-12-31 111986323 MARCUM LLP 1899 L STREET NW SUITE 850 WASHINGTON DC 20036 990 2022-01-01 581342181 SPINA BIFIDA ASSOCIATION OF AMERICA SPIN 2029443285 1600 WILSON BOULEVARD 800 ARLINGTON VA 22209 SARA STRUWE PRESIDENT AND CEO 2029443285 2023-09-29 1 SARA STRUWE XXX-XX-XXXX 0 AARON M FOX P01365820 2022274000 2023-09-29 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z SARA STRUWE 1600 WILSON BOULEVARD 800 ARLINGTON VA 22209 2437091 0 X WWW.SBAA.ORG X 1973 WI THE MISSION OF THE SPINA BIFIDA ASSOCIATION IS TO BUILD A BETTER AND BRIGHTER FUTURE FOR ALL THOSE IMPACTED BY SPINA BIFIDA 14 14 16 615 0 0 2139236 2092167 115185 67671 20425 3478 8850 20115 2283696 2183431 3458 37427 0 0 1223804 1352048 0 0 160304 809616 916339 2036878 2305814 246818 -122383 1442536 1417977 236534 403752 1206002 1014225 X TO PROVIDE INFORMATION ABOUT THE BIRTH DEFECT OF SPINA BIFIDA AND ITS RELATED CONDITIONS AND SUPPORT TO INDIVIDUALS LIVING WITH IT THROUGH EDUCATION, ADVOCACY, RESEARCH, AND SERVICE; TO FACILITATE RESEARCH INTO THE CAUSES, EFFECTS, AND TREATMENT OF SPINA BIFIDA; AND TO EDUCATE AND TRAIN THE PROFESSIONALS INVOLVED IN THE TREATMENT OF SPINA BIFIDA. 0 0 673770 35609 67671 RESEARCH AND CLINICAL CARE - THE SPINA BIFIDA ASSOCIATION (THE ASSOCIATION) DEVELOPED THE SPINA BIFIDA COLLABORATIVE CARE NETWORK (SBCCN) TO IMPROVE THE HEALTH CARE OF PEOPLE WITH SPINA BIFIDA, ENABLING THEM TO HAVE BETTER CARE. THE SBCCN, WHEN COMPLETED, WILL BUILD A SYSTEM THAT MONITORS, TRACKS, AND EVALUATES CARE PROVIDED IN SPINA BIFIDA CLINICS AND OTHER HEALTH CARE SETTINGS. THE SBCCN IS MADE UP OF PEOPLE OF DIFFERENT BACKGROUNDS AND EXPERIENCES: SPINA BIFIDA ASSOCIATION (SBA) STAFF, CHAPTER LEADERS, DOCTORS, NURSES, PSYCHOLOGISTS, THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), PARENTS OF CHILDREN WITH SPINA BIFIDA, AND ADULTS WITH SPINA BIFIDA. THE ASSOCIATION WORKED IN CONJUNCTION WITH THE NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES TO CONTINUE RESEARCH THROUGH THE NATIONAL SPINA BIFIDA PATIENT REGISTRY (NSBPR). THE SPINA BIFIDA COLLABORATIVE CARE NETWORK PRODUCED GUIDELINES FOR THE CARE OF PEOPLE LIVING WITH SPINA BIFIDA WHICH INCLUDED RESEARCH FROM THE NSBPR. 803686 EDUCATION - THE 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 325,000 PEOPLE WITH SPINA BIFIDA, PARENTS, AND CAREGIVERS AS WE CONTINUED TO EXPAND OUR REACH IN 2022 AS A RESULT OF INCORPORATING SOCIAL MEDIA. 269615 1675 CHAPTER DEVELOPMENT - THE ASSOCIATION PROMOTES THE GROWTH AND DEVELOPMENT OF ITS 11 CHAPTERS THROUGH TECHNICAL ASSISTANCE IN CAPACITY BUILDING, COMMUNICATIONS, PROGRAMMATIC RESOURCES AND GRANTS. 175289 142 GOVERNMENT RELATIONS 48347 223636 142 1970707 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 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 47 0 1 16 1 0 0 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 1 1 1 1 1 0 1 1 1 1 1 1 1 1 1 0 0 AL AR CA FL GA IL KS KY MD MA MI MN MS NH NJ NM NY NC OK OR PA RI SC TN UT VA WI WV X X X GLENRAE BROWN 2029443285 1600 WILSON BOULEVARD 800 ARLINGTON VA 22209 MARIA BOURNIAS ESQ CPA CHAIR 5.00 X X 0 0 0 MICHAEL HARTY JR IMMEDIATE PAST CHAIR 2.00 X X 0 0 0 ANSHUL VARMA TREASURER/SECRETARY 2.00 X X 0 0 0 NANCY GORE CHAIR-ELECT 2.00 X X 0 0 0 DOUG BURNS BOARD MEMBER 2.00 X 0 0 0 DAWNE WIDENER BURROWS BOARD MEMBER 2.00 X 0 0 0 TRACY DINUNZIO BOARD MEMBER 2.00 X 0 0 0 MELISSA MAY BOARD MEMBER 2.00 X 0 0 0 JOHN WEINERMD BOARD MEMBER 2.00 X 0 0 0 WILSON NEYLAND BOARD MEMBER 2.00 X 0 0 0 CHASE PHILLIPS BOARD MEMBER 2.00 X 0 0 0 KATHRYN SMITH BOARD MEMBER 2.00 X 0 0 0 MARIE THOMING BOARD MEMBER 2.00 X 0 0 0 ERIC TOBIN BOARD MEMBER 2.00 X 0 0 0 SARA STRUWE PRESIDENT AND CEO 37.50 X 144612 0 30681 GLENRAE BROWN CFO 37.50 X 115000 0 28240 MICHAEL WOOD COO 37.50 X 115000 0 28282 374612 0 87203 3 0 1 0 0 59946 890700 1141521 7430 2092167 CONFERENCE & MEETINGS 541800 67671 67671 67671 1808 1808 255330 253660 1670 1670 1670 MISCELLANEOUS INCOME 900099 20115 20115 20115 2183431 67671 0 23593 X 2500 2500 34927 34927 461815 408472 37415 15928 674535 610167 21695 42673 120708 109521 3106 8081 94990 85250 4701 5039 41184 34744 4736 1704 45329 42697 1243 1389 3704 3704 394543 371634 10821 12088 227 227 185189 97209 26684 61296 4551 3744 621 186 26639 21621 3540 1478 108305 97047 3203 8055 24165 19570 3486 1109 28102 28102 11577 9060 1942 575 DUES AND SUBSCRIPTIONS 15826 15826 MISCELLANEOUS 11465 31 11434 FILING REGISTRATION 9427 2725 6677 25 TAXES 4687 3073 1267 347 1419 662 426 331 2305814 1970707 174803 160304 381363 297686 293728 292412 153998 193502 5139 70414 126268 259841 250722 34840 9119 502392 440670 662 58320 1442536 1417977 57155 73910 8532 151928 170847 177914 236534 403752 X 964522 774316 241480 239909 1206002 1014225 1442536 1417977 -122383 -69394 0 X X 0 1 X 1 0 X 2905554 1718305 1460028 2139236 2092167 10315290 2905554 1718305 1460028 2139236 2092167 10315290 1067537 9247753 4043 21806 14227 7879 1808 49763 5 25 8850 20115 28995 10394048 375499 0.88970 0.88200 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLAENOUS - 2019 AMOUNT: $ 5. 2020 AMOUNT: $ 25. 2021 AMOUNT: $ 8,850. 2022 AMOUNT: $ 20,115. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30659 45329 75988 2229826 2305814 265291 66323 0 0 261515 252712 251651 265291 1031169 1546754 206315 141188 159288 75988 582779 65379 63178 62913 66323 257793 386690 6000 6000 5775 30659 48434 71135 -4119 67016 67903 3232 71135 64564 3339 67903 62552 2012 64564 62563 -11 62552 0.89530 0.00000 0.10469 0 0 132484 134199 -1715 36312 33233 3079 91045 83290 7755 9119 DEFERRED RENT AND LEASEHOLD INCENTIVES 177914 177914 X 2110333 -69394 -69394 2179727 3704 3704 2183431 2302110 0 2302110 3704 3704 2305814 PART V, LINE 4: THE ENDOWMENT FUNDS ARE USED TO FUND SCHOLARSHIPS FOR PEOPLE WITH SPINA BIFIDA, FUND GRANTS TO PROMOTE THE PREVENTION AND CURE OF SPINA BIFIDA, AND TO IMPROVE THE LIVES OF THOSE LIVING WITH SPINA BIFIDA. PART X, LINE 2: THE ASSOCIATION EVALUATED ITS UNCERTAINTY IN INCOME TAXES FOR THE YEAR ENDED DECEMBER 31, 2022, 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 EMERGENCY ASSISTANCE AWARDS 4 1425 ADVOCACY AWARDS 3 142 CLINICAL CARE MEETING AWARD 1 95 CAROLINA CHAPTER AWARD 1 250 PART I, LINE 2: THE ASSOCIATION PERFORMS A FINANCIAL AND PROGRAM REVIEW FOR EACH GRANT DISBURSEMENT TO ENSURE THAT SUCH GRANTS ARE USED FOR PROPER PURPOSES AND ARE NOT OTHERWISE DIVERTED FROM THE INTENDED USE. X X 0 0 0 0 0 0 0 0 0 SARA STRUWE PRESIDENT AND CEO 144612 0 0 0 0 0 0 0 30681 0 175293 0 0 0 FORM 990, PART VI, SECTION A, LINE 6 EACH CHAPTER OF THE ASSOCIATION WHICH MEETS THE AFFILIATION STANDARDS OF THE ASSOCIATION AND IS IN GOOD STANDING AT THE TIME OF EACH RELEVANT MEETING IS REFERRED TO AS 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 ASSOCIATION'S BYLAWS AND ARTICLES OF INCORPORATION 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 11B THE DRAFT VERSION OF THE FEDERAL FORM 990 IS REVIEWED BY THE PRESIDENT AND CEO AS WELL AS THE CHIEF FINANCIAL OFFICER. IT IS THEN IS GIVEN TO THE AUDIT COMMITTEE FOR REVIEW, DISCUSSION AND APPROVAL. A COPY OF THE DRAFT 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 ANY 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 TO 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 EXECUTIVE OFFICER'S (CEO) COMPENSATION BY THE BOARD OF DIRECTORS. A FORMAL REVIEW IS MADE BY THE CEO FOR ALL OTHER EMPLOYEES. THE BOARD OF DIRECTORS EMPLOYS A COMBINATION OF PERFORMANCE EVALUATION AND REVIEW OF BOTH LOCAL AND NATIONAL COMPENSATION SURVEYS TO ESTABLISH THE COMPENSATION OF THE CEO. SIMILARLY, THE CEO EMPLOYS PERFORMANCE REVIEWS AND DOCUMENTATION ON REGIONAL COMPENSATION STUDIES TO REVIEW ALL STAFF INCLUDING THE CONTROLLER. ALL STAFF PERFORMANCE REVIEWS AND COMPENSATION CHANGES ARE PRESENTED TO THE CEO PRIOR TO FINALIZING FOR WRITTEN APPROVAL. THE COMPENSATION STUDY LAST TOOK PLACE DURING DECEMBER 2021. 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. FORM 990, PART IX, LINE 11G CONSULTING SERVICES: PROGRAM SERVICE EXPENSES 371,634. MANAGEMENT AND GENERAL EXPENSES 10,821. FUNDRAISING EXPENSES 12,088. TOTAL EXPENSES 394,543.