2025-02-17T11:55:46-06:00 2024-12-31 251638525 GROSSMAN YANAK & FORD LLP 444 LIBERTY AVENUE SUITE 500 PITTSBURGH PA 15222 990 2024-01-01 200904691 C & S PATIENT EDUCATION FOUNDATION C&SP 7249400116 320 OSPREY COURT WEXFORD PA 15090 RICHARD LABUDA EXECUTIVE DIRECTOR 7249400116 2025-02-17 1 1 RICHARD E DYNOSKE P00095538 4123389300 2025-02-17 2024 2025-03-06 01:10:19Z CONQUER CHIARI RICHARD LABUDA 320 OSPREY COURT WEXFORD PA 15090 485985 0 X WWW.CONQUERCHIARI.ORG X 2004 PA SINCE OUR INCEPTION, WE HAVE MADE TREMENDOUS STRIDES TOWARDS THE GOAL OF CONQUERING CHIARI, INCLUDNG:1.SERVING AS A RESOURCE FOR INFORMATION ON CHIARI AND RELATED TOPICS VIA OUR WEBSITE (WWW.CONQUERCHIARI.ORG) AND VARIOUS PUBLICATIONS. 2. SPONSORING RESEARCH FOR CHIARI VIA OUR CONQUER CHIARI RESEARCH CONFERENCE AND THE CONQUER CHIARI RESEARCH CENTER LOCATED AT THE UNIVERSITY OF AKRON, IN WHICH GRANTS FOR RESEARCH PROJECTS FOCUS ON IMPROVING DIAGNOSTICS, ASSESSING THE COGNITIVE EFFECTS OF CHIARI, GENETIC RESEARCH, AND OTHER CRITICAL AREAS. 3. PROMOTING AWARENESS THROUGH OUR CONQUER CHIARI WALK ACROSS AMERICA, WHICH IS AN ANNUAL FUNDRAISING EVENT CONSISTING OF A SERIES OF WALKS HELD ACROSS THE COUNTRY ON THE SAME DAY. 5 4 3 150 0 0 416995 418420 4216 1532 8328 19609 -29966 -12644 399573 426917 93762 54201 0 0 201130 203036 0 0 127150 95306 71040 390198 328277 9375 98640 541359 625418 15949 1368 525410 624050 X THE ORGANIZATION IS DEDICATED TO IMPROVING THE EXPERIENCES AND OUTCOMES OF CHIARI AND SYRINGOMELIA PATIENTS BY: 1.PROVIDING ACCURATE, UP-TO-DATE, AND EASY TO UNDERSTAND INFORMATION TO PATIENTS SO THAT THEY CAN TAKE CONTROL OF THEIR HEALTH CARE AND MAKE INTELLIGENT,INFORMED DECISIONS. 2. RAISING AWARENESS AMONG FAMILY, FRIENDS, AND THE GENERAL PUBLIC SO THAT THEY CAN BETTER UNDERSTAND WHAT PATIENTS ARE GOING THROUGH AND ARE BETTER ABLE TO PROVIDE SUPPORT. 3.RAISING AWARENESS AMONG, AND PROVIDING ACCRUATE, UP-TO-DATE INFORMATION TO THE MEDICAL COMMUNITY, SO THAT ERRORS IN DIAGNOSIS AND TREATMENT ARE REDUCED. 4.SPONSORING RESEARCH TO ADVANCE THE UNDERSTANDING OF THESE CONDITIONS AND IN THE END CONQUER CHIARI. 0 0 143752 54201 GRANTS FOR RESEARCH PROJECTS FOCUSED ON IMPROVING DIAGNOSTICS, ASSESSING THE COGNITIVE EFFECTS OF CHIARI, GENETICS RESEARCH, AND OTHER CRITICAL AREAS. MOST FUNDING IS DIRECTED TOWARDS THE CONQUER CHIARI RESEARCH CENTER (CCRC), THE WORLD'S FIRST RESEARCH LABORATORY DEDICATED SOLELY TO ADVANCING THE MEDICAL AND SCIENTIFIC UNDERSTANDING OF CHIARI MALFORMATION. THE CCRC IS A STATE OF THE ART FACILITY, STAFFED WITH DISTINGUISHED RESEARCHERS, WORKING DILIGENTLY TO: APPLY THE LATEST ENGINEERING TECHNIQUES AND ANALYSIS TO IMPROVE DIAGNOSES AND TREATMENT OPTIONS, LEVERAGE THE CONQUER CHIARI PATIENT REGISTRY TO STUDY THE EPIDEMIOLOGY AND NATURAL HISTORY OF CHIARI, FOSTER COLLABORATIONS WITH LEADING CLINICIANS AND SCIENTISTS TO ADVANCE THE CONQUER CHIARI RESEARCH AGENDA AND ACT AS A FOCAL POINT FOR THE CHIARI RESEARCH. 143752 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 3 0 1 3 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 5 4 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AR CA CO CT FL GA HI IL KS KY LA ME MD MA MI MN MS NM NH NJ NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X RICHARD LABUDA 7249400116 320 OSPREY COURT WEXFORD PA 15090 RICHARD LABUDA EXECUTIVE DIRECTOR, SECRET 40.00 X X 100000 0 23466 RICHARD KUSHNER PRESIDENT, BOARD MEMBER 1.00 X X 0 0 0 DAVID LEE VICE PRESIDENT, BOARD MEMB 1.00 X X 0 0 0 MARK TOMCZAK TREASURER, BOARD MEMBER 1.00 X X 0 0 0 BLAISE NWOTCHOUANG BOARD MEMBER 1.00 X 0 0 0 100000 0 23466 0 0 0 0 0 230048 188372 20951 418420 PROGRAM RELATED SALES 900099 1532 1532 1532 19609 19609 46424 230048 59068 -12644 -12644 426917 21141 0 -12644 54201 54201 161438 66866 20044 74528 29022 12021 3603 13398 12576 5209 1561 5806 11110 10757 353 9167 9167 8331 360 1981 5990 12400 4596 2066 5738 3027 3027 2398 2398 OTHER 18095 499 985 16611 STATE REGISTRATION FEES 2291 2291 PAYROLL PROCESSING FEES 2193 2158 35 PRINTING AND SHIPPING 2028 364 1664 328277 143752 57375 127150 541359 609356 0 925 18164 3027 0 15137 541359 625418 1586 1368 14363 0 15949 1368 X 525410 601133 0 22917 525410 624050 541359 625418 98640 0 X 0 1 X 0 0 X 414545 585072 498172 464523 464844 2427156 414545 585072 498172 464523 464844 2427156 363867 2063289 73 8 1386 8328 19609 29404 5383 4216 1533 11132 2467692 0.83610 0.86710 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 18164 3027 15137 15137 X 485985 59068 59068 426917 0 426917 387345 59068 59068 328277 0 328277 PART X, LINE 2: THE FOUNDATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND APPLICABLE STATE LAW. MANAGEMENT BELIEVES THAT THERE IS NO LIABILITY RELATED TO UNCERTAIN TAX POSITIONS AT DECEMBER 31, 2024. THE FOUNDATION IS NO LONGER SUBJECT TO TAX EXAMINATIONS FOR TAX PERIODS THROUGH DECEMBER 31, 2021. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES NETTED AGAINST INCOME PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES NETTED AGAINST INCOME WALK ACROSS AMERICA 276472 230048 46424 59068 276472 230048 46424 59068 59068 -12644 1 UNIVERSITY OF AKRON 302 E BUCHTEL AVENUE AKRON OH 44325 346002924 501(C)(3) 24201 0 ONGOING BUDGET FOR CONQUER CHIARI RESEARCH CENTER, ESTABLISH "CHIARI 1000", TARGETING SYRINX UNIVERSITY OF PITTSBURGH 4200 FIFTH AVENUE PITTSBURGH PA 15260 250965591 501(C)(3) 30000 0 BIOMARKERS OF CHIARI MALFORMATION PART I, LINE 2: THE EXECUTIVE DIRECTOR IS RESPONSIBLE FOR OVERSEEING RESEARCH GRANTS. EACH GRANT RECIPIENT MUST SUBMIT A FINAL REPORT DETAILING BOTH THE WORK PERFORMED AND HOW THE FUNDS WERE USED. PART II, LINE 1D UNIVERSITY OF AKRON GRANTS WERE USED FOR ONGOING BUDGET FOR CONQUER CHIARI RESEARCH CENTER. THE FOLLOWING ACTIVITY IN 2024 RESULTS IN THE $24,201 REFLECTED ON PART II, LINE 1D: ORIGINAL GRANTS 2024: $35,937 LESS: RETURN OF 2023 GRANTS ($11,736) TOTAL GRANTS FOR 2024: $24,201 X GIFT BASKETS 134 9482 DONOR VALUE X MISCELLAENOUS DONATIONS 44 4709 ESTIMATED VALUE X GIFT CERTIFICATES 60 4410 FACE VALUE X PROFESSIONAL SERVICES 8 2350 SIMILIAR SERVICES 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION DISTRIBUTES A DRAFT 990 TO ALL BOARD DIRECTORS AND THE EXECUTIVE DIRECTOR VIA EMAIL. IF NECESSARY, DISCUSSION IS UNDERTAKEN VIA EMAIL OR BY MEETING IF SO DESIRED BY ANY DIRECTOR. A VOTE IS THEN TAKEN TO AFFIRMATIVELY ADOPT AND FILE THE 990. AT THE NEXT OFFICIAL BOARD MEETING, THE MINUTES REFLECT THE ADOPTION OF THE 990. FORM 990, PART VI, SECTION B, LINE 12C THE VOLUNTEER COORDINATOR IS RESPONSIBLE FOR DISTRIBUTING AND COLLECTING SIGNED CONFLICT DISCLOSURE STATEMENTS ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15A THE COMPENSATION COMMITTEE MEETS TO REVIEW THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AND VOLUNTEER COORDINATOR. THE COMPENSATION COMMITTEE CHAIR SEEKS INPUT FROM THE OTHER DIRECTORS AND THE EXECUTIVE DIRECTOR REGARDING ACCOMPLISHMENTS. THE COMMITTEE ESTABLISHES AN ANNUAL PERFORMANCE BONUS, IF SO EARNED, AND SALARY FOR THE FOLLOWING YEAR. SALARY AND BONUSES ARE BASED IN PART ON THE SIZE OF THE ORGANIZATION IN REVENUE AND COMPARABLE EXECUTIVE DIRECTORS' SALARIES AT SIMILAR SIZED ORGANIZATIONS. THE COMPENSATION COMMITTEE'S RECOMMENDATION IS MADE AT THE FOLLOWING BOARD MEETING AND VOTED ON BY THE BOARD. MINUTES FROM THE COMPENSATION COMMITTEE'S MEETING ARE ENTERED INTO THE RECORD. FORM 990, PART VI, SECTION C, LINE 19 FORM 990 AND THE 501(C)(3)DETERMINATION LETTER ARE AVAILABLE ON THE WEBSITE. AUDITED FINANCIALS AND POLICIES ARE INCLUDED IN THE ANNUAL REPORT WHICH IS POSTED ON THE WEBSITE.