2025-10-06T09:36:41-05:00 2024-12-31 541498950 RENNER AND COMPANY CPA PC 700 NORTH FAIRFAX STREET SUITE 400 ALEXANDRIA VA 22314 990 2024-01-01 581342181 SPINA BIFIDA ASSOCIATION OF AMERICA SPIN 2026184750 2000 DUKE STREET 300 ALEXANDRIA VA 22314 SARA STRUWE PRESIDENT AND CEO 2029443285 2025-10-02 1 1 ADRIEL HENRIQUEZ BAIRES CPA P01822536 7035351200 2025-10-02 2024 2025-03-06 01:10:19Z SARA STRUWE 2000 DUKE STREET SUITE 300 ALEXANDRIA VA 22314 2095160 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. 16 16 16 680 0 0 2142601 1387255 623689 522105 30106 2722 38114 30748 2834510 1942830 0 0 0 0 1567126 1365548 0 0 257407 1608424 679506 3175550 2045054 -341040 -102224 1019508 714042 315468 80856 704040 633186 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 589059 177601 RESEARCH AND CLINICAL CARETHE SPINA BIFIDA ASSOCIATION (SBA) LEADS NATIONAL EFFORTS TO IMPROVE HEALTHCARE AND QUALITY OF LIFE FOR INDIVIDUALS WITH SPINA BIFIDA THROUGH RESEARCH, ADVOCACY, AND CLINICAL SUPPORT. WITH SUPPORT FROM THE CDC, SBA COORDINATES THE SPINA BIFIDA COLLABORATIVE CARE NETWORK (SBCCN) TO CONNECT CLINICS, RESEARCHERS, AND FAMILIES WITH BEST PRACTICES. SBA DEVELOPED AND MAINTAINS THE GUIDELINES FOR THE CARE OF PEOPLE WITH SPINA BIFIDA, A COMPREHENSIVE, EVIDENCE-BASED FRAMEWORK FOR MULTIDISCIPLINARY CARE. SBA ALSO COLLABORATES WITH THE NATIONAL SPINA BIFIDA PATIENT REGISTRY (NSBPR), CONTRIBUTING TO CLINICAL RESEARCH AND DATA-DRIVEN QUALITY IMPROVEMENT ACROSS 20 CLINICS AND NEARLY 12,000 PATIENTS.IN RESPONSE TO CRITICAL HEALTH NEEDS, SBA CO-DEVELOPED THE UMPIRE PROTOCOL FOR EARLY KIDNEY PROTECTION AND THE LIFESPAN BOWEL MANAGEMENT PROTOCOL TO GUIDE LIFELONG BOWEL CARE. SBA'S RESEARCH AGENDA, SHAPED BY OVER 1,600 COMMUNITY MEMBERS, TARGETS SIX KEY AREAS INCLUDING INCONTINENCE, MENTAL HEALTH, AND SELF-MANAGEMENT. ONGOING ADVOCACY INITIATIVES ADDRESS ACCESS TO ESSENTIAL MEDICAL SUPPLIES AND SERVICES, INCLUDING CATHETERS AND TRANS ANAL IRRIGATION. SBA ALSO IS THE LYNCHPIN FOR RESEARCH EFFORTS IN THE CLINICAL COMMUNITY. SBA SUPPORTS RESEARCH RECRUITMENT, IDENTIFIES EVIDENCE GAPS, AND ADVOCATES FOR ACCESS TO CRITICAL MEDICAL SUPPLIES AND SERVICES.SBA ALSO LEADS THE ANNUAL CLINICAL CARE MEETING AND IS ADVANCING ADULT CARE BY BUILDING PROVIDER NETWORKS AND SPECIALTY-SPECIFIC TRAINING MODELS TO ENSURE CONTINUITY OF CARE INTO ADULTHOOD. 478969 EDUCATIONSBA DELIVERS VITAL EDUCATION AND SUPPORT THROUGH ITS NATIONAL RESOURCE CENTER, EXPERT-LED WEBINARS, AND PEER-TO-PEER PROGRAMS. SBA'S ONLINE EDUCATION SERIES AND "ASK THE EXPERT" SESSIONS OFFER ACCESSIBLE, EVIDENCE-BASED GUIDANCE FOR INDIVIDUALS AND FAMILIES. THE NATIONAL RESOURCE CENTER PROVIDES CONFIDENTIAL REFERRALS AND A COMPREHENSIVE LIBRARY OF SPINA BIFIDA-SPECIFIC MATERIALS, INCLUDING TOOLS FOR PARENTING AND TRANSITION PLANNING. SBA'S WEBSITE AND E-COMMUNITIES CONNECT THOUSANDS WITH TRUSTED INFORMATION AND PEER SUPPORT. THE ANNUAL SPINA BIFIDA AWARENESS MONTH CAMPAIGN REACHES NEARLY ONE MILLION PEOPLE. SBA ALSO SUPPORTS EXPECTANT PARENTS AND HEALTHCARE PROVIDERS THROUGH MENTORING AND PROFESSIONAL LISTSERVS, BUILDING KNOWLEDGE AND COMMUNITY ACROSS THE LIFESPAN. 163546 PUBLIC POLICYSBA EMPOWERS INDIVIDUALS TO ADVOCATE FOR POLICIES THAT IMPROVE THE LIVES OF THOSE WITH SPINA BIFIDA. THROUGH ITS GRASSROOTS ADVOCACY NETWORK, PARTICIPANTS ENGAGE FEDERAL AND STATE OFFICIALS ON KEY ISSUES SUCH AS HEALTHCARE ACCESS, MEDICAL DEVICE INNOVATION, AND DISABILITY RIGHTS. SBA'S ANNUAL TEAL ON THE HILL EVENT BRINGS ADVOCATES TO CAPITOL HILL, HELPING SECURE FEDERAL FUNDING INCREASES FOR THE NATIONAL SPINA BIFIDA PROGRAM AT THE CDC.SBA CHAMPIONS SUSTAINED INVESTMENT IN SPINA BIFIDA RESEARCH THROUGH PARTNERSHIPS WITH THE CDC AND NIH, ADVANCING PROGRAMS LIKE THE NSBPR, SBCCN, AND UMPIRE PROTOCOL. SBA ALSO CO-FOUNDED THE NATIONAL PARTNERSHIP FOR PEDIATRIC TO ADULT CARE TRANSITION (NPPACT) TO ADDRESS SYSTEMIC GAPS IN THE TRANSITION TO ADULT HEALTHCARE FROM PEDIATRIC HEALTHCARE. THE ORGANIZATION COLLABORATES WITH NATIONAL COALITIONS TO PROMOTE ACCESS TO CARE, ASSISTIVE TECHNOLOGY, AND REHABILITATION SERVICES. 409982 375252 CHAPTER DEVELOPMENT AND OTHERTHE ASSOCIATION PROMOTES THE GROWTH AND DEVELOPMENT OF ITS 14 CHAPTERS THROUGH TECHNICAL ASSISTANCE IN CAPACITY BUILDING, COMMUNICATIONS, PROGRAMMATIC RESOURCES AND GRANTS. 409982 375252 1641556 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 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 22 0 1 16 1 0 0 0 0 0 0 0 0 0 0 0 0 X 16 16 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 2000 DUKE STREET 300 ALEXANDRIA VA 22314 NANCY GORE CHAIR 5.00 X X 0 0 0 MARIA BOURNIAS ESQ CPA IMMEDIATE PAST CHAIR 2.00 X X 0 0 0 ERIC TOBIN CHAIR-ELECT 2.00 X X 0 0 0 ANSHUL VARMA SECRETARY/TREASURER 2.00 X X 0 0 0 MARIE THOMING PE MEMBER AT LARGE 2.00 X 0 0 0 JAMES ARMIJO DIRECTOR 2.00 X 0 0 0 ROBIN M BOWMAN MD DIRECTOR 2.00 X 0 0 0 TRACY DINUNZIO DIRECTOR 2.00 X 0 0 0 ELLEN FREMION MD FAAP FACP DIRECTOR 2.00 X 0 0 0 CHASE PHILLIPS DIRECTOR 2.00 X 0 0 0 SHELIAH ROY DIRECTOR 2.00 X 0 0 0 KATHRYN ANN NAVARETTE SMITH RN MN 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 MELISSA WIEGEL 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 139468 0 24250 MICHAEL WOOD CHIEF OPERATING OFFICER 37.50 X 95445 0 19884 GLENRAE BROWN CHIEF FINANCIAL OFFICER 37.50 X 113972 0 24304 348885 0 68438 2 0 1 0 0 4285 534631 848339 1387255 SPECIAL EVENTS 900099 344504 344504 CONFERNECE AND MEETING 541800 177601 177601 522105 14512 14512 140540 152330 -11790 -11790 -11790 OTHER INCOME 900099 30748 30748 30748 1942830 552853 0 2722 X 418245 336996 28383 52866 602116 491990 40246 69880 251627 195042 17731 38854 93560 76245 6309 11006 28171 28171 707 707 321653 276505 9761 35387 1006 1006 150106 121371 1791 26944 5185 4161 512 512 28827 23567 2904 2356 59447 56158 1292 1997 17712 15702 1501 509 1147 1147 12218 8739 1739 1740 BANK FEES 34570 19927 1439 13204 EQUIPMENT RENTAL AND MA 13057 9697 1358 2002 TAXES AND PENALTIES 2693 1459 1084 150 ENTERNTAINMENT 1351 1351 1656 1640 16 2045054 1641556 146091 257407 298258 310452 225711 83573 21774 19947 36941 46484 233328 232043 2432 1285 401165 239716 33227 12585 1019508 714042 192466 58428 20890 2000 102112 20428 315468 80856 X 360402 230395 343638 402791 704040 633186 1019508 714042 -102224 31370 0 X X 0 1 X 1 0 X 1460028 2139236 2092167 2142601 1247256 9081288 1460028 2139236 2092167 2142601 1247256 9081288 9081288 14227 7879 1808 15488 14512 53914 8850 20114 28995 38114 30708 126781 9261983 508961 0.98050 0.98380 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 45414 105376 150790 1893557 2044347 252217 63054 0 0 251651 265291 308689 252217 1077848 1616772 159288 75988 205182 150790 591248 62913 66323 77172 63054 269462 404193 5775 30659 45686 45414 127534 343638 213000 16473 170320 402791 239909 242096 8771 147138 343638 241479 60080 -4119 57531 239909 274846 3232 36599 241479 312034 3339 40527 274846 0.14896 0.85104 0 0 132484 132484 0 57100 55815 1285 43744 43744 0 1285 OPERATING LEASE LIABILITY 20428 20428 X 1973493 31370 31370 1942123 707 707 1942830 2044347 0 2044347 707 707 2045054 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: IN ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES, ACCOUNTING STANDARDS REQUIRE AN ENTITY TO RECOGNIZE THE FINANCIAL STATEMENT IMPACT OF A TAX POSITION WHEN IT IS MORE-LIKELY-THAN-NOT THAT THE POSITION WILL NOT BE SUSTAINED UPON EXAMINATION. MANAGEMENT EVALUATED THE ASSOCIATION'S TAX POSITION AND CONCLUDED THERE ARE NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH THE PROVISIONS OF THE GUIDANCE. X 0 0 0 0 0 0 0 0 0 SARA STRUWE PRESIDENT AND CEO 139468 0 0 0 0 0 0 0 24250 0 163718 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 276,505. MANAGEMENT AND GENERAL EXPENSES 9,761. FUNDRAISING EXPENSES 35,387. TOTAL EXPENSES 321,653. 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.