2024-07-15T16:59:14-05:00 2023-12-31 541342298 KOSITZKA WICKS AND COMPANY 4405 COX ROAD SUITE 200 GLEN ALLEN VA 23060 990 2023-01-01 943000301 HYDROCEPHALUS ASSOCIATION HYDR 3012023811 4340 EAST WEST HIGHWAY SUITE 905 BETHESDA MD 20814 DIANA GRAY PRESIDENT AND CEO 3012023811 2024-07-15 1 DIANA GRAY 943000301 1 JENNICA JARDINE WHITFIELD CPA P01379267 8048551200 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z DIANA GRAY 4340 EAST WEST HIGHWAY SUITE 905 BETHESDA MD 20814 3960989 0 X WWW.HYDROASSOC.ORG X 1986 DE FIND A CURE FOR HYDROCEPHALUS AND IMPROVE THE LIVES OF THOSE IMPACTED BY THE CONDITION. 24 24 25 1600 0 0 4244362 3520084 0 0 48407 137427 -144226 -29128 4148543 3628383 715310 565398 0 0 1738289 1993111 0 0 199405 1163895 1071147 3617494 3629656 531049 -1273 4516368 4359202 852119 612422 3664249 3746780 X FIND A CURE FOR HYROCEPHALUS AND IMPROVE THE LIVES OF THOSE IMPACTED. WE WILL ACCOMPLISH THIS BY COLLABORATING WITH PATIENTS, CAREGIVERS, RESEARCHERS AND INDUSTRY, RAISING AWARENESS, AND FUNDING INNOVATIVE, HIGH-IMPACT RESEARCH TO PREVENT, TREAT AND CURE HYDROCEPHALUS. 0 0 1039030 553398 RESEARCHTHE HYDROCEPHALUS ASSOCIATION (HA) REMAINS DEDICATED TO SUPPORTING HIGH QUALITY, HIGH-IMPACT RESEARCH THROUGH CONTINUED SUPPORT OF THE HA PATIENT POWERED INTERACTIVE ENGAGEMENT REGISTRY (HAPPIER), HA NETWORK FOR DISCOVERY SCIENCE (HANDS), HYDROCEPHALUS CLINICAL RESEARCH NETWORK (HCRN), AND ADULT HCRN (AHCRN). HAPPIER PROVIDES PATIENTS AND CAREGIVERS THE OPPORTUNITY TO ENGAGE IN RESEARCH WHILE PROVIDING RESEARCHERS ACCESS TO CRITICAL DATA. HANDS PROVIDES THE CONNECTIONS, TECHNOLOGY, AND TOOLS NEEDED TO SPUR AND SUPPORT INNOVATIVE BASIC AND TRANSLATIONAL RESEARCH, WHILE THE PEDIATRIC FOCUSED HCRN AND ADULT FOCUSED AHCRN PROVIDE THE STRUCTURE AND EXPERTISE NECESSARY TO EFFICIENTLY AND THOROUGHLY TEST THESE NEW TECHNOLOGIES AND CLINICAL THERAPIES WITH THE HIGHEST CLINICAL STANDARDS. BY LINKING BASIC, TRANSLATIONAL, AND CLINICAL RESEARCHERS, HA HAS CREATED A PIPELINE TO MOVE RESEARCH FROM THE BENCH TO THE BEDSIDE. 1528519 12000 SUPPORT AND EDUCATION THE HYDROCEPHALUS ASSOCIATION IS DEEPLY COMMITTED TO IMPROVING THE LIVES OF THOSE AFFECTED BY HYDROCEPHALUS BY PROVIDING DIRECT SUPPORT AS WELL AS EDUCATIONAL RESOURCES IN COLLABORATION WITH A WIDE RANGE OF STAKEHOLDERS TO RAISE AWARENESS AND KNOWLEDGE. IN 2023, HA STAFF PROVIDED ONE-ON-ONE SUPPORT THROUGH PHONE CALLS, EMAILS, AND INTERACTIONS ON SOCIAL MEDIA TOTALING OVER 5,500 TOUCHES. HA CONDUCTED A TOTAL OF 236 VIRTUAL SOCIAL GATHERINGS AND/OR EDUCATIONAL MEETINGS WITH MEDICAL AND OTHER PROFESSIONALS JOINING AS GUEST SPEAKERS IN OUR LOCAL SUPPORT GROUPS - COMMUNITY NETWORKS. THESE EVENTS PROVIDED OUR COMMUNITY WITH THE OPPORTUNITY TO FIND FRIENDSHIP AND RECEIVE EDUCATION. OUR PEER SUPPORT VOLUNTEERS MADE 94 CONNECTIONS TO PROVIDE FIRST-HAND KNOWLEDGE AND EXPERIENCE ON LIVING WITH HYDROCEPHALUS. NEW NATIONAL LEVEL GROUPS EMERGED ONE FOR MEN WITH HYDROCEPHALUS AND FAMILIES IMPACTED BY L1CAM. THE ASSOCIATION CONTINUES TO SUPPORT OUR YOUNG ADULTS' ACADEMIC PURSUITS THROUGH OUR SCHOLARSHIP PROGRAM. ESTABLISHED IN 1994, HA HAS AWARDED 239 SCHOLARSHIPS TO DESERVING FUTURE LEADERS OF THE HYDROCEPHALUS COMMUNITY. IN 2023, HA OFFERED 12 EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS LIVING WITH HYDROCEPHALUS WHO EXHIBIT PROMISING LEADERSHIP SKILLS AND ARE INVOLVED IN THEIR COMMUNITIES. 145260 ADVOCACY THE HYDROCEPHALUS ASSOCIATION ADVOCACY COMMITTEE HAS CONTINUED TO MONITOR AND SUPPORT KEY LEGISLATION THAT WILL BENEFIT THE HYDROCEPHALUS COMMUNITY. HYDROCEPHALUS WAS ONCE AGAIN INCLUDED ON THE LIST OF ELIGIBLE CONDITIONS TO RECEIVE FUNDING UNDER THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP) ADMINISTERED BY THE DEPARTMENT OF DEFENSE (DOD). THE CDMRP HAS APPROPRIATIONS OF $15.24 BILLION, WHICH ARE USED TO FUND THE BEST SCIENTIFIC AND MEDICAL RESEARCH. WE ARE PROUD OF THIS CONTINUED ACCOMPLISHMENT. HA HIRED AN ADVOCACY ENGAGEMENT MANAGER TO LEAD THE DAILY OPERATIONS AND STRATEGY OF THE ASSOCIATION, INCLUDING DEEPENING OUR RELATIONSHIPS ON CAPITOL HILL AND BUILDING A GRASSROOTS ADVOCACY NETWORK. HA CONTINUES TO CO-LEAD WITH THE SPINA BIFIDA ASSOCIATION A COALITION FOCUSED ON ISSUES AROUND CHILDREN WITH CHRONIC MEDICAL CONDITIONS TRANSITIONING TO ADULT MEDICAL CARE AND SERVICES. HA ALSO CONTINUES TO BE ACTIVE IN ADVOCACY MEETINGS AND SIGN-ON LETTERS PUT TOGETHER AS PART OF THE NATIONAL HEALTH COUNCIL (NHC), AMERICAN BRAIN COALITION (ABC), NATIONAL ORGANIZATION FOR RARE DISEASE (NORD), RESEARCH!AMERICA, AND THE NATIONAL HEATH DEFENSE CONSORTIUM (DHRC). 119806 CONFERENCES 119806 2832615 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 0 0 1 1 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 5 0 1 25 1 0 0 0 0 0 0 0 0 0 0 X 24 24 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AR CA CT FL GA IL KS KY ME MD MA MI MN MS NH NJ NM NY NC OH OK OR PA RI SC TN UT VA WV WI CO WA DC X X DIANA GRAY 3012023811 4340 EAST WEST HIGHWAY NO 905 BETHESDA MD 20814 BRETT WEITZ PAST CHAIR 3.50 X X 0 0 0 JASON PRESTON CHAIR 4.50 X X 0 0 0 TERESA MASTRANGELO VICE CHAIR 3.50 X X 0 0 0 RAYMOND R MOSER JR JD DIRECTOR 3.50 X X 0 0 0 LYDIA VALADEZ-MCSTAY VICE CHAIR 3.50 X X 0 0 0 TESSA VAN DER WILLIGEN VICE CHAIR 3.50 X X 0 0 0 HUGH ALLEN DIRECTOR 3.50 X 0 0 0 SALLY BALDUS DIRECTOR 3.50 X 0 0 0 SALLY DUNKELBERGER DANIEL DIRECTOR 3.50 X 0 0 0 PAM FINLAYSON DIRECTOR 3.50 X 0 0 0 SUSAN FIORELLA DIRECTOR 3.50 X 0 0 0 MICHAEL SIEGEL PHD DIRECTOR 3.50 X 0 0 0 MARK HAMILTON MD DIRECTOR 3.50 X 0 0 0 DAVID LIMBRICK MD DIRECTOR 3.50 X 0 0 0 MIKE MUHONEN MD DIRECTOR 3.50 X 0 0 0 JENNIFER POPE DIRECTOR 3.50 X 0 0 0 EILEEN RODGER DIRECTOR 3.50 X 0 0 0 STEPHANIE VOGT DIRECTOR 3.50 X 0 0 0 MICHAEL WILLIAMS MD DIRECTOR 3.50 X 0 0 0 DEITRA MATTHEWS MPA DIRECTOR 3.50 X 0 0 0 SHERYL ROSENBERG JD DIRECTOR 3.50 X 0 0 0 KIPP COCO DIRECTOR 3.50 X 0 0 0 TAMMY LEE DIRECTOR 3.50 X 0 0 0 JASON SPEARS DIRECTOR 3.50 X 0 0 0 DIANA GRAY PRESIDENT AND CEO 45.00 X 224971 0 22810 BRIAN SAPHIER TREASURER AND CFO 40.00 X 137458 0 16389 AMANDA GARZON CHIEF OPERATING OFFICER 45.00 X 137714 0 16433 LINDA RILEY NATIONAL DIRECTOR OF DEVELOPMENT 40.00 X 135010 0 16145 MONICA CHAU NATIONAL DIRECTOR OF RESEARCH PROGRAMS 40.00 X 129492 0 15085 JUDITH FROEHLICH NATIONAL DIRECTOR OF MARKETING AND COMMUNICATIONS 40.00 X 127120 0 14868 891765 0 101730 6 0 1 0 0 X 2417587 1102497 4067 3520084 137427 137427 0 2417587 331577 -331577 -331577 75623 0 75623 75623 3257 1029 2228 2228 RETURNED GRANT AWARD 900099 209298 209298 MISCELLANEOUS REVENUE 900099 15300 15300 224598 3628383 77851 0 30448 510641 510641 12000 12000 42757 42757 401628 295611 84285 21732 1324227 1007342 254574 62311 40221 30676 7675 1870 104476 62897 37119 4460 122559 93433 23056 6070 9297 1590 7707 18580 18580 3000 3000 135318 112695 11352 11271 26038 9129 16909 227326 182053 22724 22549 188497 160792 20474 7231 125689 96409 22237 7043 148818 113747 8771 26300 4574 4574 16514 12667 2922 925 12241 12208 33 SERVICE CHARGES 56346 781 49819 5746 SITE EXPENSES 43044 42906 26 112 DUES AND SUBSCRIPTIONS 42375 36178 1395 4802 BANK CHARGES 6799 6799 6691 5311 1339 41 3629656 2832615 597636 199405 1431128 1206278 394679 254386 46849 40324 89047 97903 228251 212921 12823 15330 2264530 2529577 51627 277312 163777 4516368 4359202 221391 280022 173299 457429 332400 852119 612422 X 2568262 2532659 1095987 1214121 3664249 3746780 4516368 4359202 -1273 83804 0 X X 0 1 X 1 0 X 3694185 3399671 4038576 4093067 3260063 18485562 3694185 3399671 4038576 4093067 3260063 18485562 148150 18337412 10956 6229 2707 48407 137427 205726 16150 15129 150 15300 46729 18738017 111624 0.97860 0.96420 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER MISCELLANEOUS INCOME - 2019 AMOUNT: $ 16,150. 2021 AMOUNT: $ 15,129. 2022 AMOUNT: $ 150. 2023 AMOUNT: $ 15,300. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 1 2000 0 1 1000 1 0 3000 0 PART II-B, LINE 1: AS PART OF OUR PROGRAM TO EDUCATE CONGRESS AND OTHERS ABOUT THE NEEDS OF HYDROCEPHALUS PATIENTS AND THEIR FAMILIES, AND TO ADVOCATE FOR MORE FUNDING FOR HYDROCEPHALUS RESEARCH, THE HYDROCEPHALUS ASSOCIATION PARTICIPATED IN A NUMBER OF COALITIONS (INCLUDING THE NATIONAL HEALTH COUNCIL, NATIONAL PARTNERSHIP FOR PEDIATRIC TO ADULT CARE TRANSITION, RESEARCH!AMERICA, AND THE AMERICAN BRAIN COALITION). 79544 11774 91318 91318 -11774 79544 91318 1573 1573 91318 91118 200 2973 2973 91318 91118 3862 3862 91118 1.00000 0 0 110656 95326 15330 117595 117595 0 15330 SBA LOAN 150926 OPERATING LEASE LIABILITY 181474 332400 X 3502889 83804 83804 3419085 209298 209298 3628383 3420358 0 3420358 209298 209298 3629656 PART X, LINE 2: THE ASSOCIATION IS A QUALIFYING NONPROFIT ORGANIZATION AS DEFINED IN SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND THE TAX STATUTES OF DELAWARE, AND THEREFORE IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES. ACCORDINGLY, THE ACCOMPANYING FINANCIAL STATEMENTS DO NOT REFLECT A PROVISION OR LIABILITY FOR FEDERAL AND STATE INCOME TAXES. THE ASSOCIATION DOES NOT BELIEVE IT HAS ANY UNCERTAIN TAX POSITIONS AS OF DECEMBER 31, 2023. FISCAL YEARS ENDING ON OR AFTER 2020 REMAIN SUBJECT TO EXAMINATION BY FEDERAL AND STATE AUTHORITIES. PART XI, LINE 4B - OTHER ADJUSTMENTS: RETURNED GRANT AWARD PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURNED GRANT AWARD PART V, LINE 4: THE ORGANIZATION USES ENDOWMENT FUNDS FOR EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS WITH HYDROCEPHALUS. 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 TO FUND THE CLINICAL RESEARCH SITE FOR THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK 42757 0 0 0 0 0 0 42757 0 42757 NORTH AMERICA TO FUND THE CLINICAL RESEARCH SITE FOR THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK 42757 CHECK 0 1 0 0 0 0 0 0 SOUTH FLORIDA WALK 162625 162625 8383 HA 40TH ANNIVERSARY GALA 436703 436703 161349 40 1596974 1596974 155685 2196302 2196302 325417 325417 -325417 73623 1 1.00000 73623 73623 NC SC CO IA MI TX NY KY LA AZ FL PA 1 0 1 0 1.00000 LINDA RILEY 4340 EAST WEST HIGHWAY SUITE 905 BETHESDA MD 20814 0 LINDA RILEY NATIONAL DIRECTOR OF DEVELOPMENT AND MANAGES THE WALK PROGRAM WHOSE VOLUNTEERS CONDUCT THE RAFFLES. 1 1 CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVE DESK JJ36 CLEVELAND OH 44195 912153073 501(C)(3) 46211 0 TO FUND THE CLINICAL RESEARCH SITE FOR THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK PRIMARY CHILDREN'S FOUNDATION 36 SOUTH STATE STREET SUITE 1600 SALT LAKE CITY UT 84111 870453633 501(C)(3) 25000 0 TO FUND THE CLINICAL RESEARCH SITE FOR THE HYDROCEPHALUS CLINICAL RESEARCH NETWORK UNIVERSITY OF UTAH 75 SOUTH 2000 EAST RAB 211 SALT LAKE CITY UT 84108 876000525 501(C)(3) 140614 0 TO FUND THE CLINICAL RESEARCH SITE FOR THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK WASHINGTON UNIVERSITY 700 ROSEDALE AVENUE ST LOUIS MO 63112 430653611 501(C)(3) 48816 0 MECHANISMS OF HYDROCEPHALUS RESEARCH GRANT - TO FUND BASIC RESEARCH ON HYDROCEPHALUS BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 501(C)(3) 50000 0 MECHANISMS OF HYDROCEPAHLUS RESEARCH GRANT - TO FUND BASIC RESEARCH FOR THE TREATMENT OF HYDROCEPHALUS BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA BCM 200 HOUSTON TX 770303498 741613878 501(C)(3) 50000 0 MECHANISMS OF HYDROCEPAHLUS RESEARCH GRANT - TO FUND BASIC RESEARCH FOR THE TREATMENT OF HYDROCEPHALUS UNIVERSITY OF CALIFORNIA SAN FRANCISCO FOUNDATION 2001 THE EMBARCADERO 3RD FLOOR SAN FRANCISCO CA 94133 942829914 501(C)(3) 50000 0 MECHANISMS OF HYDROCEPAHLUS RESEARCH GRANT - TO FUND BASIC RESEARCH FOR THE TREATMENT OF HYDROCEPHALUS UNIVERSITY OF MICHIGAN 3003 SOUTH STATE STREET ANN HARBOR MI 48109 454135256 501(C)(3) 50000 0 MECHANISMS OF HYDROCEPAHLUS RESEARCH GRANT - TO FUND BASIC RESEARCH FOR THE TREATMENT OF HYDROCEPHALUS SEATTLE CHILDREN'S HOSPITAL PO BOX 5371 MS 818-FI SEATTLE WA 981455005 910564748 501(C)(3) 50000 0 MECHANISMS OF HYDROCEPAHLUS RESEARCH GRANT - TO FUND BASIC RESEARCH FOR THE TREATMENT OF HYDROCEPHALUS SCHOLARSHIP 12 12000 1 X X X X 0 0 0 0 0 0 0 0 0 DIANA GRAY PRESIDENT AND CEO 224971 0 0 0 0 0 9616 0 13194 0 247781 0 0 0 AMANDA GARZON CHIEF OPERATING OFFICER 137714 0 0 0 0 0 5566 0 10867 0 154147 0 0 0 BRIAN SAPHIER TREASURER AND CFO 137458 0 0 0 0 0 5542 0 10847 0 153847 0 0 0 LINDA RILEY NATIONAL DIRECTOR OF DEVELOPMENT 135010 0 0 0 0 0 5472 0 10673 0 151155 0 0 0 X 8 78203 NYSE VALUE 0 0 0 PART I, COLUMN (B): THE NUMBER OF CONTRIBUTIONS REPRESENTS THE NUMBER OF DONORS THAT GAVE STOCK. FORM 990, PART VI, SECTION A, LINE 1A ACCORDING TO OUR BYLAWS, THE EXECUTIVE COMMITTEE, UNLESS LIMITED IN A RESOLUTION OF THE BOARD, SHALL HAVE AND MAY EXERCISE ALL OF THE AUTHORITY OF THE BOARD IN THE MANAGEMENT OF THE BUSINESS AND AFFAIRS OF THE CORPORATION BETWEEN MEETINGS OF THE BOARD. FORM 990, PART VI, SECTION B, LINE 11B ALL BOARD MEMBERS RECEIVE AN ELECTRONIC OR PAPER COPY OF THE IRS FORM 990 PRIOR TO ITS SUBMISSION. BOARD MEMBERS MUST SUBMIT ANY QUESTIONS OR CHANGES TO THE PRESIDENT & CHIEF EXECUTIVE OFFICER, WHO SUBMITS THE CHANGES TO THE TAX PREPARER. FORM 990, PART VI, SECTION B, LINE 12C EACH YEAR BOARD MEMBERS GET A COPY OF THE CONFLICT OF INTEREST POLICY AND A DISCLOSURE FORM TO FILL OUT WITH DETAILS OF ANY POSSIBLE CONFLICTS THAT MAY EXIST. FORM 990, PART VI, SECTION B, LINE 15A THE PROCESS FOR DETERMINING THE COMPENSATION FOR THE PRESIDENT & CHIEF EXECUTIVE OFFICER (WHO IS ALSO IN CHARGE OF FINANCIAL MANAGEMENT OF THE ORGANIZATION) POSITION INCLUDES THE FOLLOWING STEPS: 1) THE BOARD CHAIR AND PRESIDENT & CHIEF EXECUTIVE OFFICER EACH COLLECT COMPARABLE SALARY INFORMATION (E.G., SALARY STUDIES). 2) THE BOARD CHAIR MAKES A RECOMMENDATION FOR PRESIDENT & CEO COMPENSATION TO THE EXECUTIVE COMMITTEE. 3) EXECUTIVE COMMITTEE MEMBERS (WITHOUT A CONFLICT OF INTEREST) VOTE ON THE RECOMMENDATION BY THE BOARD CHAIR FOR PROPOSED CEO COMPENSATION, AND A RECORD OF THE VOTE IS RECORDED IN EXECUTIVE COMMITTEE MINUTES. FORM 990, PART VI, SECTION C, LINE 18 FORM 990 IS AVAILABLE ON THE HYDROCEPHALUS ASSOCIATION WEBSITE AT WWW.HYDROASSOC.ORG/ANNUAL-REPORTS-AND-FINANCIALS FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC AT THE ORGANIZATION'S OFFICE OR ON THE ORGANIZATION'S WEBSITE UPON REQUEST. FORM 990, STATEMENT OF REVENUE LINE 11A CONSISTS OF AN UNSPENT GRANT AWARD RETURNED TO THE ASSOCIATION IN 2023. FORM 990, PART XII, LINE 2C: THE AUDIT COMMITTEE SELECTS AND OVERSEES AN INDEPENDENT ACCOUNTING FIRM TO CONDUCT THE AUDIT. NO CHANGE IN THE SELECTION METHOD OCCURRED THIS YEAR.