2024-10-29T09:36:43-05:00 2023-12-31 541498950 RENNER AND COMPANY CPA PC 700 NORTH FAIRFAX STREET SUITE 400 ALEXANDRIA VA 22314 990 2023-01-01 581342181 SPINA BIFIDA ASSOCIATION OF AMERICA SPIN 2026184750 1600 WILSON BLVD 800 ARLINGTON VA 22209 SARA STRUWE PRESIDENT AND CEO 2029443285 2024-10-25 1 1 ADRIEL HENRIQUEZ BAIRES CPA P01822536 7035351200 2024-10-25 2023 2024-10-15 13:58:12Z SARA STRUWE 1600 WILSON BOULEVARD SUITE 800 ARLINGTON VA 22209 3458122 0 X HTTPS://WWW.SPINABIFIDAASSOCIATION.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 15 680 0 0 2092167 2142601 67671 623689 3478 30106 20115 38114 2183431 2834510 37427 0 0 0 1352048 1567126 0 0 240587 916339 1608424 2305814 3175550 -122383 -341040 1417977 1019508 403752 315468 1014225 704040 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 691263 331360 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 THEN 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, PSYCHOLOGIST, 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 NSBPR. IN 2023 THE WORLD CONGRESS ON SPINA BIFIDA RESEARCH AND CARE HOSTED 100 HEALTH AND RESEARCH INSTITUTES, FROM 18 COUNTRIES AND 35 STATES WITHIN THE U.S. AND THE DISTRICT OF COLUMBIA. 1272520 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. 448594 CHAPTER DEVELOPMENT THE ASSOCIATION PROMOTES THE GROWTH AND DEVELOPMENT OF ITS 14 CHAPTERS THROUGH TECHNICAL ASSISTANCE IN CAPACITY BUILDING, COMMUNICATIONS, PROGRAMMATIC RESOURCES AND GRANTS. 272920 330443 272920 330443 2685297 1 0 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 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 46 0 1 15 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 THE ASSOCIATION 2026184750 1600 WILSON BLVD 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 NANCY GORE CHAIR-ELECT 2.00 X X 0 0 0 ANSHUL VARMA SECRETARY/TREASURER 2.00 X X 0 0 0 ROBIN M BOWMAN MD DIRECTOR 2.00 X 0 0 0 DOUG BURNS DIRECTOR 2.00 X 0 0 0 ELLEN FREMION MD FAAP FACP DIRECTOR 2.00 X 0 0 0 TRACY DINUNZIO DIRECTOR 2.00 X 0 0 0 CHASE PHILLIPS DIRECTOR 2.00 X 0 0 0 KATHRYN ANN NAVARETTE SMITH RN MN DIRECTOR 2.00 X 0 0 0 ERIC TOBIN DIRECTOR 2.00 X 0 0 0 BRYAN VODICKA DIRECTOR 2.00 X 0 0 0 DAWNE WIDENER-BURROWS DIRECTOR 2.00 X 0 0 0 JOHN WIENER MD DIRECTOR 2.00 X 0 0 0 SARA STRUWE PRESIDENT AND CEO 37.50 X 141598 0 21879 MICHAEL WOOD CHIEF OPERATING OFFICER 37.50 X 113221 0 21709 GLENRAE BROWN CHIEF FINANCIAL OFFICER 37.50 X 114488 0 21709 369307 0 65297 3 0 1 0 LOEWS HOTEL & CO FINANCIAL SVS LVC HOTEL 455 DUKE DRIVE SUITE 103 FRANKLIN TN 37067 CONFERENCE HOTEL 240953 DAVINCI DIRECT INC PO BOX 1640 PLYMOUTH MA 02362 FUNDRAISING CONSULTANT 130229 VENABLE LLP PO BOX 62727 BALTIMORE MD 21264 GOVERNMENT RELATIONS CONSULTANT 108500 3 70003 921475 1151123 2142601 CONFERENCE AND MEETIN 541800 331360 331360 SPECIAL EVENTS 900099 292329 292329 623689 15488 15488 638230 623612 14618 14618 14618 OTHER INCOME 900099 38114 38114 38114 2834510 661803 0 30106 X 441149 365978 21737 53434 757510 634197 37561 85752 260073 209541 12359 38173 108394 90373 5562 12459 75927 75927 47956 47956 1780 1780 675164 661265 7230 6669 4306 4306 163485 137115 8849 17521 2698 2224 237 237 32479 22088 6231 4160 127187 119880 2109 5198 324687 323766 542 379 7359 7359 11549 8057 1746 1746 BANK FEES 48243 28952 9710 9581 MISCELLANEOUS 43614 1379 42069 166 EQUIPMENT RENTAL AND MA 22016 15991 2986 3039 FILING REGISTRATION 8693 6718 320 1655 11281 5511 5352 418 3175550 2685297 249666 240587 297686 298258 292412 193502 225711 21774 126268 36941 233328 230896 9119 2432 440670 401165 58320 33227 1417977 1019508 73910 192466 151928 20890 177914 102112 403752 315468 X 774316 360402 239909 343638 1014225 704040 1417977 1019508 -341040 30855 0 X X 0 1 X 1 1 1 X 1718305 1460028 2139236 2092167 2142601 9552337 1718305 1460028 2139236 2092167 2142601 9552337 9552337 21806 14227 7879 1808 15488 61208 25 8850 20114 28995 38114 96098 9709643 331360 0.98380 0.98970 X 45686 159496 205182 2968588 3173770 308689 77172 0 0 252712 251651 265291 308689 1078343 1617515 141188 159288 75988 205182 581646 63178 62913 66323 77172 269586 404379 6000 5775 30659 45686 88120 239909 242096 8771 147138 343638 241479 60080 -4119 57531 239909 274846 3232 36599 241479 312034 3339 40527 274846 341658 2012 31636 312034 0.17460 0.82540 0 0 132484 132484 0 57100 55121 1979 43744 43291 453 2432 OPERATING LEASE LIABILITY 102112 102112 X 2863585 30855 30855 2832730 1780 1780 2834510 3173770 0 3173770 1780 1780 3175550 PART V, LINE 4: THE PERMANENT ENDOWMENT FUNDS ARE USED TO FUND SCHOLARSHIPS WITH PEOPLE WITH SPINA BIFIDA, FUND GRANTS TO PROMOTE THE PREVENTION AND SCIENTIFIC UNDERSTANDING 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, 2023, 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. X 0 0 0 0 0 0 0 0 0 SARA STRUWE PRESIDENT AND CEO 141598 0 0 0 0 0 0 0 21879 0 163477 0 0 0 FORM 990, PART VI, SECTION A, LINE 6 EACH CHAPTER OF THE ASSOCATION WHICH MEETS THE AFFILIATION STANDARDS OF THE ASSOCIATION AND IS IN GOOD STANDING AT THE TIME OF EACH RELEVENT 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 SLATE OF BOARD MEMBERS. 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 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 ISSUES 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 OF INTEREST 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 CONSULTANTS: PROGRAM SERVICE EXPENSES 661,265. MANAGEMENT AND GENERAL EXPENSES 7,230. FUNDRAISING EXPENSES 6,669. TOTAL EXPENSES 675,164. PART XII LINE 2C THE ASSOCIATION HAS NOT CHANGED THE OVERSIGHT OR SELECTION PROCESS OF THE AUDIT COMMITTEE. FORM 990, PART I, LINE 5 & PART V, LINE 2A THE ASSOCIATION HAS CONTRACTED WITH A PROFESSIONAL EMPLOYER ORGANIZATION, COADVANTAGE, TO SERVE AS THE EMPLOYER OF RECORD FOR THE ASSOCIATION'S EMPLOYEES. AS SUCH COADVANTAGE IS RESPONSIBLE FOR TAX FILINGS RELATED TO EMPLOYEES. COADVANTAGE ISSUED 15 W-2 FORMS IN 2023 FOR THE ASSOCIATION EMPLOYEES.