2025-10-18T11:05:15-04:00 2024-12-31 460952065 BOUNTIFUL PEAK ADVISORS 1564 SOUTH 500 WEST SUITE 201 BOUNTIFUL UT 840107400 990 2024-01-01 680567493 PACHYONYCHIA CONGENITA FUND PACH 8019878758 PO BOX 17850 HOLLADAY UT 84117 NATHAN SCHWARTZ TREASURER 8019878758 2025-10-10 true true SHALAUN T HOWELL CPA P00969274 8012943155 2025-10-18 2024 2025-03-06 01:10:19Z PC PROJECT JANICE N SCHWARTZ PO BOX 17850 HOLLADAY UT 84117 3821152 false X WWW.PACHYONYCHIA.ORG X 2003 UT THE ORGANIZATION'S MISSION IS TO FIGHT FOR A CURE FOR THE PACHYONYCHIA CONGENITA DISEASE, CONNECT AND HELP PATIENTS, AND EMPOWER RESEARCH. 7 7 2 18 0 395801 437142 3735 650 88610 377186 2687 1555 490833 816533 273320 465221 0 91290 94821 9098 32123 230939 174099 595549 743239 -104716 73294 3130275 3007104 119049 22320 3011226 2984784 THE ORGANIZATION'S MISSION IS TO FIGHT FOR A CURE FOR THE PACHYONYCHIA CONGENITA DISEASE, CONNECT AND HELP PATIENTS, AND EMPOWER RESEARCH. false false 72974 650 PATIENT SUPPORT PROVIDED FUNDING FOR RESEARCH IN FINDING A CURE FOR PACHYONYCHIA CONGENITA. MAINTAINED A WEB SITE TO PROVIDE INFORMATION ABOUT AND ASSIST RESEARCH EFFORTS. PROVIDED SUPPORT MEETINGS TO INDIVIDUALS AFFECTED BY PACHYONYCHIA CONGENITA. PROVIDED INDIVIDUAL SUPPORT AS NEEDED FOR PATIENTS VIA EMAILS, TELEPHONE CALLS, OR THROUGH THE HELP OF PC PATIENT ADVOCATES OR MEMBERS OF THE PC SCIENTIFIC AND MEDICAL ADVISORY BOARD. MORE SUPPORT IS OUTLINED NEXT IN THE RESOURCES AND BENEFITS THROUGH MEMBERSHIP IN THE IPCRR. 99962 IPCRR MAINTAINED THE INTERNATIONAL PACHYONYCHIA CONGENITA RESEARCH REGISTRY (IPCRR). SINCE 2004, AND WITH IRB APPROVAL, THE IPCRR HAS PROVIDED OVER 3000 PATIENTS WITH FREE GENETIC TESTING, PHYSICIAN CONSULTATIONS, PATIENT MEETINGS, CHAT GROUPS, SPECIAL WEB MEETINGS, AND BI-MONTHLY PATIENT NEWSLETTERS. THROUGH THE IPCRR, PATIENTS ALSO HAVE OPPORTUNITIES TO PARTICIPATE IN CLINICAL TRIALS AND STUDIES. 506201 465221 IPCC SINCE 2004, THE IPCC HAS HELD ANNUAL SCIENTIFIC MEETINGS, AWARDED RESEARCH GRANTS, COORDINATED RESEARCH WITH BOTH ACADEMIC AND PRIVATE INSTITUTIONS, CONDUCTED MONTHLY WEB MEETINGS WITH THE IPCC GENETICS TEAM, ESTABLISHED AND MET ANNUAL RESEARCH GOALS, AND DISTRIBUTED QUARTERLY NEWSLETTERS TO OVER 400 PHYSICIANS AND SCIENTISTS. WORKING WITH LEADERS IN THE IPCC, CLINICAL TRIALS HAVE BEEN COMPLETED AND NUMEROUS CLINICAL AND RESEARCH STUDIES HAVE BEEN CONDUCTED. IT IS ESTIMATED THAT NEARLY 200 ARTICLES HAVE BEEN PUBLISHED IN LEADING SCIENTIFIC JOURNALS BY THE ORGANIZATION OR ITS IPCC MEMBERS, A NUMBER OF WHICH CITED IPCRR DATA AND RESEARCH AND CLINICAL STUDIES DONE THROUGH IPCC. 679137 true true false true false false false false false false true false false false true true true false false false true true false false false false false true false false false false false false false false false false false false false false false false false false false true 2 0 2 true false false false false false false false false false false false false X 7 7 false false false false false false false true true false false true true true true true true false false false AL AR CA FL GA HI IL KS KY MA MD MI MN MS NC ND NH NJ NM NV NY OR PA RI SC TN UT VA WI WV X X X JOANNE UDY 8019878758 PO BOX 17850 HOLLADAY UT 84117 X JANICE N SCHWARTZ EXECUTIVE DI 40.00 X X 0 0 0 JACK PADOVANO CHAIR 4.00 X X 0 0 0 KAY DEE HOLMES SECRETARY 0.50 X X 0 0 0 JASON HUNTER CPA TREASURER 0.50 X X 0 0 0 C DAVID HANSEN MD BOARD MEMBER 8.00 X 0 0 0 JAMES RITTLE BOARD MEMBER 0.50 X 0 0 0 AARON KLEIN BOARD MEMBER 0.50 X 0 0 0 false false false 437142 437142 PATIENT SUPPORT FEES 900099 650 650 650 100654 100654 3281151 3004619 276532 276532 276532 REFUNDS AND CASH BACK REWARDS 900099 1555 1555 1555 816533 2205 377186 246706 246706 218515 218515 88083 75486 7291 5306 6738 5780 552 406 6830 6830 9098 9098 7231 7231 43057 41404 1653 14318 9234 893 4191 24347 23749 331 267 14721 12779 1387 555 24999 24999 4000 4000 8852 7586 733 533 4749 4749 LICENSE AND DUES 13371 3460 77 9834 CATERING 5279 5218 61 BANK AND MERCHANT FEES 2345 221 191 1933 743239 679137 31979 32123 354386 209112 57283 8352 15852 58742 27711 36984 31031 2719639 2687890 10914 5936 3130275 3007104 7360 15799 100000 11689 6521 119049 22320 X 3011226 2984784 3011226 2984784 3130275 3007104 73294 -99736 X true X false true false X 557174 512628 567482 395801 437142 2470227 557174 512628 567482 395801 437142 2470227 1673759 796468 71463 98363 86721 65899 100654 423100 218 18 2687 1555 4478 2897805 4610 0.27490 0.26970 X PART II, LINE 10 OTHER INCOME 4,478 SUPPLEMENTAL INFORMATION THE FOLLOWING FACTS AND CIRCUMSTANCES ALSO WERE REPORTED TO COME TO A FINAL DETERMINATION THAT THE ORGANIZATION IS A PUBLIC CHARITY: 1.170A-9(E)(3)(II) ATTRACTION OF PUBLIC SUPPORT. PACHYONYCHIA CONGENITA (PC) IS AN ULTRA-RARE SKIN DISORDER WHICH CAUSES PAINFUL BLISTERS AND CALLUSES ON FEET AS WELL AS THICKENED NAILS, CYSTS, AND OTHER PAINFUL SYMPTOMS. THE ORGANIZATION'S PRIMARY GOALS HAVE BEEN (1) TO INTEREST LEADING SCIENTISTS AND PHYSICIANS WHO SPECIALIZE IN KERATIN DISORDERS IN RESEARCH FOR THE ULTRA-RARE DISORDER, PC, AND TO ESTABLISH COLLABORATION AMONG RESEARCHERS; (2) TO ESTABLISH AND MAINTAIN AN INTERNATIONAL PC PATIENT REGISTRY (IPCRR) AS A RESOURCE FOR SCIENTIFIC RESEARCH; AND (3) TO PROVIDE EDUCATION AND SUPPORT FOR PHYSICIANS, SCIENTISTS, AND PC PATIENTS AND THEIR FAMILIES WORLDWIDE. BY THEIR VERY NATURE, THESE TYPES OF ACTIVITIES HAVE THE POTENTIAL TO ATTRACT SUPPORT FROM GOVERNMENTAL UNITS AND PUBLIC CHARITIES ON A CONTINUOUS BASIS. AT NO TIME HAS THE ORGANIZATION CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTERESTS OF ITS FOUNDERS OR RELATED PARTIES. THE ORGANIZATION MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICITATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES ARE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS AND OTHERS. 1.170A-9(E)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE ORGANIZATION RECEIVED 26.97% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2018 TO 2023. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE ORGANIZATION HAS RECEIVED ITS SUPPORT FROM INDIVIDUALS, BUSINESSES, AND FOUNDATIONS NOT RELATED TO THE ORGANIZATION THROUGH EITHER BUSINESS OR FAMILY RELATIONS. IN ADDITION TO DIRECT DONATIONS, MANY INDIVIDUALS HAVE DONATED TIME AND SERVICES TO ASSIST THE ORGANIZATION IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE ORGANIZATION HAS THREE BOARDS THAT GOVERN ITS ACTIVITIES: 1. THE BOARD OF TRUSTEES DOES NOT REPRESENT THE PERSONAL OR PRIVATE INTERESTS OF A LIMITED NUMBER OF DONORS OR RELATED PERSONS. ALL BOARD MEMBERS SERVE WITHOUT COMPENSATION. MEMBERS OF THE BOARD HAVE SPECIAL KNOWLEDGE OR EXPERTISE TO ASSIST IN FULFILLING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 20 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DERMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS IN KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE ORGANIZATION REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES EACH MONTH. CONFERENCE CALLS ARE REGULARLY SCHEDULED WITH THE ENTIRE GROUP AND WITH SPECIAL SUB-GROUPS FOR PLANNING. THIS BOARD IS AVAILABLE FOR CONSULTATION REGARDING PATIENT CARE AND PATIENT NEEDS. 3. VOLUNTARY PATIENT ADVOCATES WORK THROUGH VARIOUS TECHNOLOGIES AND SOCIAL MEDIA, SUCH AS FACEBOOK, TO PROVIDE PATIENT OUTREACH AND PATIENT- TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVAILABILITY OF PUBLIC FACILITIES OR SERVICES; PUBLIC PARTICIPATION IN PROGRAMS OR POLICIES. (A) THE FACT THAT AN ORGANIZATION IS THE TYPE WHICH GENERALLY PROVIDES FACILITIES OR SERVICES DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE ORGANIZATION ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED, INCLUDING MARIO CAPECCHI (WINNER OF THE 2007 NOBEL PRIZE FOR MEDICINE). AT THE MEETING, THE GROUP FORMED THE INTERNATIONAL PC CONSORTIUM (IPCC) TO ENCOURAGE COLLABORATION FOR PC RESEARCH. THERE ARE NOW SEVERAL HUNDRED EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGENTS AND EXPERTISE TO ASSIST OTHER IPCC MEMBERS IN REGARD TO PC RESEARCH AND PATIENT CARE. THE MAJORITY OF THESE PARTICIPANTS REPRESENT NON-GOVERNMENTAL ORGANIZATIONS THAT SERVE MEMBERS OF A CHARITABLE CLASS IN THEIR HOME COUNTRIES. A LIST OF PARTICIPANTS CAN BE PROVIDED IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE ORGANIZATION HAS SPONSORED AN ANNUAL SCIENTIFIC MEETING EACH YEAR. THE ORGANIZATION ALSO PROVIDES EXPERTISE DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC BY RESPONDING TO DOZENS OF TELEPHONE, MAIL, AND INTERNET INQUIRIES EACH WEEK AT NO CHARGE FROM PUBLIC HEALTH OFFICIALS, PRACTITIONERS, AND MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD WILL PROVIDE RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS ARE NEEDED. THE IPCC HAS ORGANIZED A STEERING COMMITTEE TO DIRECT EFFORTS OF THE IPCC AND THREE WORKING TEAMS, INCLUDING (1) A RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH, (2) A DIAGNOSTICS AND GENETICS TEAM, AND (3) A PHYSICIANS NETWORK. EACH OF THESE TEAMS ACTIVELY PROVIDE PUBLIC SERVICE TO THOSE WITH PC AND MANY OTHER RELATED SKIN DISORDERS. (B) THE FACT THAT AN ORGANIZATION IS AN EDUCATION OR RESEARCH INSTITUTION WHICH REGULARLY PUBLISHES SCHOLARLY STUDIES...WILL ALSO BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." FROM 2004 TO 2023, THE ORGANIZATION'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO OVER 200 SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEEDED. MANY ARE AVAILABLE ONLINE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH-ARTICLES/. ALSO, IPCC NEWSLETTERS AND PC NEWSLETTERS HAVE BEEN PUBLISHED REGULARLY SINCE 2004. IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS AROUND THE WORLD. (C) SIMILARLY, THE FOLLOWING FACTORS WILL ALSO BE CONSIDERED EVIDENCE THAT AN ORGANIZATION IS "PUBLICLY SUPPORTED": (1) THE PARTICIPATION IN, OR SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. SEE (A) ABOVE FOR A DESCRIPTION OF THE ORGANIZATION'S INTERNATIONAL SCIENTIFIC CONFERENCE FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE ORGANIZATION HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT MEETINGS HAVE BEEN HELD IN THE FOLLOWING LOCATIONS: BOSTON, MA (2019) SALT LAKE CITY, UT (2004 & 2009, 2017) - HOSTED BY UNIVERSITY OF UTAH KANSAS CITY, MO (2004) - HOSTED BY F.I.R.S.T DUNDEE, SCOTLAND (2004 AND 2006) - HOSTED BY UNIVERSITY OF DUNDEE NIAGRA FALLS, ONTARIO (2005) PARK CITY, UT (2007) PITLOCHRY, SCOTLAND (2008) EDINBURGH, SCOTLAND (2010, 2012, 2014, 2016) PARIS, FRANCE (2010, 2012, 2014) PHILADELPHIA, PA (2011) SANTA CRUZ, CA (2013) NEWARK, NJ (2015) LONDON, ENGLAND (2018) (CO-SPONSORED BY PC PROJECT EUROPE) BOSTON, MA (2019) VIRTUALLY (2020, 2021, 2022) AMSTERDAM, THE NETHERLANDS (2022) NEW ORLEANS,LA (2023) LISBON, PORTUGAL (2024) MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEER THEIR TIME AND PAY THEIR OWN EXPENSES TO ATTEND PATIENT SUPPORT MEETINGS. PATIENTS AND MANY OF THEIR FAMILY MEMBER ATTEND SUPPORT MEETINGS. THE MEETING LOCATION ALTERNATES EACH YEAR BETWEEN EUROPE AND THE UNITED STATES TO GIVE PATIENTS BROAD ACCESS TO INFORMATION AND SUPPORT. 2. THE INTERNATIONAL PC RESEARCH REGISTRY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WCG IRB (STUDY 2004/0468/1057496). IRB APPROVAL HAS BEEN RENEWED EACH YEAR. THIS IS THE ONLY ACTIVE REGISTRY FOR PC PATIENTS IN THE WORLD. THERE ARE NEARLY 3,000 PATIENTS REGISTERED. PC PATIENTS ARE REGISTERED FROM OVER 60 COUNTRIES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP. THE ORGANIZATION IS NOT A MEMBERSHIP ORGANIZATION. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false false false false false false false false false 19392 15250 4142 39350 12461 26889 31031 LEASE LIABILITY 6521 6521 X 903066 -99736 193500 93764 809302 7231 7231 816533 929508 193500 193500 736008 7231 7231 743239 SCHEDULE D, PAGE 3, PART X THE ORGANIZATION HAS BEEN RECOGNIZED BY THE INTERNAL REVENUE SERVICE (IRS) AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3), QUALIFYING FOR THE CHARITABLE CONTRIBUTION DEDUCTION UNDER SECTION 170(B)(1)(A)(VI), AND HAS BEEN DETERMINED NOT TO BE A PRIVATE FOUNDATION UNDER SECTION 509(A). THE ORGANIZATION IS ANNUALLY REQUIRED TO FILE A RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX (FORM 990) AND IS SUBJECT TO INCOME TAX ON NET INCOME THAT IS DERIVED FROM BUSINESS ACTIVITIES THAT ARE UNRELATED TO THEIR EXEMPT PURPOSES. MANAGEMENT HAS DETERMINED THAT THE ORGANIZATION IS NOT SUBJECT TO UNRELATED BUSINESS INCOME TAX. MANAGEMENT BELIEVES THAT THE ORGANIZATION HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN IN ITS ANNUAL FILING AND DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE ORGANIZATION'S FORMS 990 ARE NO LONGER SUBJECT TO TAX EXAMINATION FOR YEARS BEFORE 2021. true EUROPE GRANTMAKING PC RESEARCH 118555 MIDDLE EAST AND NORTH AFRICA GRANTMAKING PC RESEARCH 99960 218515 218515 EUROPE PC RESEARCH 21055 WIRE TRANSFER EUROPE PC RESEARCH 97500 WIRE TRANSFER MIDDLE EAST AND NORTH AFRICA PC RESEARCH 99960 WIRE TRANSFER 1 2 false false false false false false SCHEDULE F, PAGE 1, PART I, LINE 2 THE USE OF GRANT FUNDS ARE OVERSEEN BY MEMBERS OF OUR INTERNATIONAL PACHYONYCHIA CONGENITA CONSORTIUM (IPCC) AND MEDICAL AND SCIENTIFIC ADVISORY BOARD (MSAB). WE RECEIVE REGULAR UPDATES FROM THE AWARDEES/RESEARCHERS ABOUT THE PROGRESS OF THE GRANT PROJECT. THE END PRODUCT OF A GRANT IS NORMALLY A PUBLICATION, PRESENTATION AT OUR ANNUAL IPCC SYMPOSIUM, AND/OR A SCIENTIFIC POSTER WITH RESULTS OF THE GRANT PROJECT--ALL IS SHARED WITH PC PROJECT. SCHEDULE F, PAGE 1, PART I, LINE 3 EUROPE 118,555 0 MIDDLE EAST AND NORTH AFRICA 99,960 0 true UT SOUTHWESTERN MEDICAL CENTER SPONSORED PROGRAMS ADMINISTRATION PO BOX 841765 1950 N STEMMONS FREEWAY STE 5010 DALLAS TX 75207 756002868 GOV 50000 PC RESEARCH JOHN HOPKINS UNIVERSITY DEPT NEUROSURGERY 408 BIOPHYSICS BLDG 725 NORTH WOLFE ST BALTIMORE MD 21205 520595110 501C3 97500 PC RESEARCH MASSACHUSETTS GENERAL HOSPITAL THIER 209 50 BLOSSOM STREET BOSTON MA 02114 041564655 501C3 99206 PC RESEARCH 3 SCHEDULE I, PAGE 1, PART I, LINE 2 THE USE OF GRANT FUNDS ARE OVERSEEN BY MEMBERS OF OUR INTERNATIONAL PACHYONYCHIA CONGENITA CONSORTIUM (IPCC) AND MEDICAL AND SCIENTIFIC ADVISORY BOARD (MSAB). WE RECEIVE REGULAR UPDATES FROM THE AWARDEES/RESEARCHERS ABOUT THE PROGRESS OF THE GRANT PROJECT. THE END PRODUCT OF A GRANT IS NORMALLY A PUBLICATION, PRESENTATION AT OUR ANNUAL IPCC SYMPOSIUM, AND/OR A SCIENTIFIC POSTER WITH RESULTS OF THE GRANT PROJECT--ALL IS SHARED WITH PC PROJECT FORM 990, PAGE 6, PART VI, LINE 11B THE BOARD OF DIRECTORS REVIEWS A DRAFT OF THE FORM 990 BEFORE THE FORM IS FILED. A COPY OF THE FINALIZED TAX RETURN IS PROVIDED TO THE BOARD OF DIRECTORS EACH YEAR AFTER THE RETURN IS FILED. FORM 990, PAGE 6, PART VI, LINE 12C THE ORGANIZATION HAS A FORMAL CONFLICT OF INTEREST POLICY. THIS POLICY REQUIRES ANNUAL WRITTEN DISCLOSURE OF POTENTIAL CONFLICTS OF INTEREST BY ALL BOARD MEMBERS AND MANAGEMENT. CONFLICT OF INTEREST FORMS ARE REVIEWED ANNUALLY AT LEAST ANNUALLY BY THE EXECUTIVE DIRECTOR AND BOARD CHAIR. IF A CONFLICT IS DETERMINED TO EXIST, BOARD MEMBERS ARE RECUSED FROM VOTING ON TOPICS RELATED TO THE CONFLICT. FORM 990, PAGE 6, PART VI, LINE 17 MISSISSIPPI, NORTH CAROLINA, NORTH DAKOTA, NEW HAMPSHIRE, NEW JERSEY, NEW MEXICO, NEVADA, NEW YORK, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, UTAH, VIRGINIA, WISCONSIN, WEST VIRGINIA FORM 990, PAGE 6, PART VI, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON WRITTEN REQUEST.