2024-11-11T08:34:55-00:00 2023-12-31 822851604 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2023-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTY DUNLEAVY TREASURER 4808003510 2024-11-11 true true KRISTINA MORGAN CPA P01370742 6022302700 2024-11-10 2023 2024-10-15 13:58:12Z MARTY DUNLEAVY PO BOX 4130 SCOTTSDALE AZ 85261 1048179 false X ALPORTSYNDROME.ORG X 2007 AZ TO IMPROVE THE LIVES OF THOSE AFFECTED BY ALPORT SYNDROME THROUGH EDUCATION, EMPOWERMENT, ADVOCACY, AND FUNDING RESEARCH. THE FOUNDATIONS VISION IS TO MAKE ALPORT SYNDROME A TREATABLE DISEASE AND FIND A CURE. 9 9 2 179 0 990503 953036 0 170 63369 0 990673 1016405 100268 111151 0 145098 151973 0 26298 254089 349410 499455 612534 491218 403871 2277966 2669586 42491 31167 2235475 2638419 THE FOUNDATION WAS CREATED TO EDUCATE AND SUPPORT PATIENTS AND FAMILIES THAT HAVE BEEN AFFECTED BY THIS GENETIC KIDNEY DISEASE WITH A GOAL OF FUNDING RESEARCH, TO FIND MORE EFFECTIVE TREATMENT PROTOCOLS AND TO ULTIMATELY FIND A CURE. false false 526625 97151 HELD THE FIRST IN-PERSON PATIENT AND FAMILY MEETING SINCE 2019, ALPORT CONNECT SAN DIEGO IN OCTOBER 2023. IT WAS ALSO OUR LARGEST IN-PERSON EVENT TO DATE, HOSTING PATIENTS, FAMILY MEMBERS, AND MEDICAL EXPERTS FROM AROUND THE COUNTRY, WITH 175 IN ATTENDANCE. ASF BOARD, STAFF, AND VOLUNTEERS REPRESENTED THE NEEDS OF THE ALPORT COMMUNITY AT IN-PERSON EVENTS WITH KEY STAKEHOLDERS. WE PROVIDED INSIGHTS AND GUIDANCE FROM THE PATIENT PERSPECTIVE RELATED TO PEDIATRIC CLINICAL TRIALS AT A JULY MEETING ORGANIZED BY THE KIDNEY HEATH INITIATIVE, NEPHCURE, AND THE FDA. IN NOVEMBER, ASF EXHIBITED AT THE AMERICAN SOCIETY OF NEPHROLOGYS KIDNEY WEEK CONFERENCE IN PHILADELPHIA, PA, WHICH BROUGHT TOGETHER OVER 12,000 PARTICIPANTS IN THE NEPHROLOGY SPACE. RECEIVED THE LARGEST NUMBER OF APPLICATIONS TO DATE FROM A TREMENDOUS GROUP OF YOUNG ADULTS LIVING WITH ALPORT SYNDROME DURING THE 2023 PAUL SILVER ENRICHMENT AWARD CYCLE. DUE TO THEIR OUTSTANDING APPLICATIONS, SEVEN INDIVIDUALS WERE AWARDED FUNDS PROVIDED BY THE SILVER FAMILY, ASF, AND SEVERAL DONORS. 526625 true true false false false false false false false true false false false false false true true false false false false false false false false false false true true false false false false false false false false true false false false false false false false false false true 5 0 true 2 true false false false false false false false false false false false false X 9 9 false true false false false false false true true false false true true true true true true true false false CA FL IL KY MA MD NC NJ NY PA UT VA X MARTY DUNLEAVY 4808003510 PO BOX 4130 SCOTTSDALE AZ 85261 X ANDREW KRONENBERG BOARD CHAIR 006.00 X X 0 0 0 RYAN LINDER SECRETARY 002.00 X X 0 0 0 MARTIN DUNLEAVY TREASURER 006.00 X X 0 0 0 SHARON LAGAS CO-FOUNDER, DIRECTOR PAST CHAIR 002.00 X X 0 0 0 ANDRE WEINSTOCK DIRECTOR RESEARCH CHAIR 010.00 X 0 0 0 AMY RHODES DIRECTOR FB MODERATOR 004.00 X 0 0 0 DANIEL KILPATTRICK DIRECTOR FINANCE COMMITTEE 002.00 X 0 0 0 PHILLIP KUMNICK DIRECTOR DEV. CHAIR 002.00 X 0 0 0 STEPHEN MALACH DIRECTOR PROGRAM CHAIR 006.00 X 0 0 0 LISA BONEBRAKE EXECUTIVE DIRECTOR 065.00 X 0 0 0 false false false L BONEBRAKE LLC 6255 LUSK BLVD STE 140 SAN DIEGO CA 92121 MANAGEMENT SERVICES 103335 1 953036 19191 953036 59382 59382 35761 31774 3987 3987 3987 1016405 63369 97151 97151 14000 14000 0 0 0 0 141115 133156 7163 796 0 0 10858 10246 551 61 104168 72917 20834 10417 0 23033 5758 16123 1152 0 0 2336 2336 6325 6325 32098 19795 6932 5371 63712 63712 0 0 57922 49904 6300 1718 0 44119 43999 89 31 0 0 10983 9445 1208 330 4714 4206 411 97 0 612534 526625 59611 26298 1885297 601572 243696 48941 20032 5824 29487 12901 1888171 81307 130324 2277966 2669586 15616 17167 26875 14000 42491 31167 X 1586866 1935485 648609 702934 2235475 2638419 2277966 2669586 403871 -927 X false true X true false X 548370 738310 993479 990503 953036 4223698 548370 738310 993479 990503 953036 4223698 2014580 2209118 2508 707 47 170 59382 62814 4286512 2657 0.51540 0.45350 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 648609 320032 97151 168556 702934 301458 548941 180644 21146 648609 129204 421146 230568 18324 301458 20123 307458 178254 20123 129204 183161 220123 275000 108161 20123 1.00000 false false Financial derivatives and other financial products Closely-held equity interests Federal income taxes X 1017544 -927 2066 1139 1016405 1016405 614600 2066 2066 612534 612534 V 4 THE ORGANIZATIONS DONOR RESTRICTED NET ASSETS WERE RESTRICTED FOR THE FOLLOWING TIME RESTRICTIONS ON CONTRIBUTIONS RECEIVABLE AND RESEARCH GRANTS. X 2 MANAGEMENT BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR ANY INCOME TAX POSITIONS TAKEN, AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE FOUNDATION WOULD RECOGNIZE FUTURE ACCRUED INTEREST AND PENALTIES RELATED TO UNRECOGNIZED TAX BENEFITS AND LIABILITIES IN INCOME TAX EXPENSE IF SUCH INTEREST AND PENALTIES ARE INCURRED. true University of Michigan 1000 Victors Way Suite 1A Ann Arbor MI 48108 386006309 501c3 97151 Natural History Study in Alport Syndrome 1 Scholarships-Paul Silver Award 7 14000 Part I Line 1 FOR RESEARCH FUNDING, ASF USES AN APPLICATION PROCESS ALONG WITH A PANEL OF OUTSIDE REVIEWERS WHICH EVALUATE GRANT APPLICATIONS ON THE SPECIFIC AIMS OF THE PROJECT, THE PROJECTS BACKGROUND AND SIGNIFICANCE, AND THE PROJECTS RESEARCH DESIGN AND METHODS. Part I Line 2 REPORTING REQUIREMENTS - WITHIN 60 DAYS OF THE END OF THE FUNDING PERIOD, IT IS REQUIRED THAT A TYPE-WRITTEN REPORT BY THE PRINCIPAL INVESTIGATOR ON THE RESEARCH THAT RESULTED FROM THE ASF FUNDING SUMMARY WHICH CAN BE PUBLISHED BY ASF AS IS OR IN EDITED FORM MUST BE SUBMITTED. IF THE FUNDING IS FOR MORE THAN A ONE-YEAR PERIOD, THEN A TYPE-WRITTEN PROGRESS REPORT MUST BE ISSUED BY THE PRINCIPAL INVESTIGATOR AT THE END OF EACH YEAR ON THE FUNDING COMMENCEMENT DATE ANNIVERSARY AND SENT TO ASF. Part I Line 2 ACCOUNTING REQUIREMENTS - A FINAL DETAILED ACCOUNTING OF THE FUNDS SPENT IS REQUIRED TO BE SENT TO ASF WITHIN 60 DAYS OF THE END OF THE FUNDING PERIOD. IF THE FUNDING PERIOD IS LONGER THAN ONE YEAR, THEN ANNUAL FINANCIAL REPORTS MUST BE FILED WITH ASF ON THE FUNDING COMMENCEMENT DATE ANNIVERSARY. AT THE END OF THE FUNDING PERIOD, ANY UNUSED FUNDS MUST BE RETURNED TO ASF, UNLESS A LETTER EXPLAINING THE SITUATION AND REQUESTING AN EXTENSION OF THE FUNDING PERIOD WITHOUT ADDITIONAL FUNDS IS SUBMITTED AT LEAST 90 DAYS PRIOR TO THE END OF THE FUNDING PERIOD AND APPROVED BY ASF. Part I Line 2 THE PAUL SILVER ENRICHMENT AWARD PROGRAM WAS ESTABLISHED IN THE MEMORY OF AN ALPORT SYNDROME PATIENT. RECIPIENTS ARE SELECTED BY A COMMITTEE COMPRISED OF 1 BOARD MEMBER, 1 SILVER FAMILY MEMBER, AND 2 FRIENDS OF THE SILVER FAMILY. RECIPIENTS ARE SELECTED BASED ON ESSAYS AND WRITTEN APPLICATIONS. RECIPIENTS PROVIDE WRITTEN REPORTS AND A VIDEO OF HOW FUNDS WERE SPENT. FAMILY OF BOARD MEMBERS AND STAFF ARE NOT ELIGIBLE TO APPLY. Part III Line 1 COLUMN B THE NUMBER OF RECIPIENTS REFLECTS THE NUMBER OF INDIVIDUALS ASSISTED WITH SCHOLARSHIPS DURING THE YEAR. LBONEBRAKE LLC EXEC. DIR. OWNED 104168 MANAGEMENT SERVICES false Part IV Line 1 THE ORGANIZATION HAS AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC, FOR LISA BONEBRAKE TO PROVIDE EXECUTIVE DIRECTOR SERVICES TO THE ORGANIZATION. LISA IS THE SOLE OWNER OF LBONEBRAKE LLC. Form 990, Part VI, Section A, Line 3 THE ORGANIZATION HAS AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC, FOR LISA BONEBRAKE TO PROVIDE EXECUTIVE DIRECTOR SERVICES TO THE ORGANIZATION. LBONEBRAKE LLC IS PAID 103,335 FOR THE SERVICES RENDERED TO THE ORGANIZATION BY LISA BONEBRAKE. Form 990, Part VI, Section B, Line 11b THE TREASURER OF THE ORGANIZATION DISTRIBUTES A PDF COPY OF 990 RETURN TO ALL BOARD MEMBERS FOR A REVIEW AND COMMENT PRIOR TO BEING FILED. Form 990, Part VI, Section B, Line 12c AT EACH BOARD AND COMMITTEE MEETING, IF THERE IS A DISCUSSION OF SELECTING OR ENGAGING A VENDOR OR SERVICE PROVIDER, ALL IN ATTENDANCE ARE ASKED TO RECUSE THEMSELVES FROM THIS DISCUSSION IF THERE COULD BE A PERCEIVED CONFLICT. ANNUALLY, THE ORGANIZATION REVIEWS AND DISCUSSES THE CONFLICT OF INTEREST POLICY AND REQUESTS THAT EACH BOARD MEMBER LIST AND ACKNOWLEDGE ANY KNOWN CONFLICTS. Form 990, Part VI, Section B, Line 15 THE BOARD MAY HIRE AND COMPENSATE INDIVIDUALS FOR NECESSARY SERVICES RENDERED TO THE ORGANIZATION SO LONG AS SUCH COMPENSATION IS REASONABLE. THE BOARD SHALL DETERMINE REASONABLE COMPENSATION AMOUNTS BASED UPON COMPENSATION PAID BY SIMILARLY SITUATED NONPROFITS FOR LIKE SERVICES. THE BOARD MAY RELY UPON SALARY STUDIES, AS WELL AS DATA REGARDING COMPENSATION PAID BY AT LEAST THREE SPECIFIC PEER ORGANIZATIONS OF SIMILAR SIZE TO DETERMINE REASONABLE COMPENSATION. THE TERMS OF SUCH COMPENSATION, INFORMATION RELIED UPON TO DETERMINE THE TERMS OF ANY COMPENSATION, AND ITS SOURCE SHALL BE RECORDED IN WRITING. AN INDIVIDUAL WHO IS A VOTING MEMBER OF THE BOARD OR A COMMITTEE WITH THE BOARD DELEGATED POWERS AND WHO RECEIVES COMPENSATION, DIRECTLY OR INDIRECTLY, FROM THE FOUNDATION FOR SERVICES IS PRECLUDED FROM PARTICIPATING IN DISCUSSIONS OR VOTES PERTAINING TO THEIR OWN COMPENSATION. Form 990, Part VI, Section C, Line 19 THE ORGANIZATION WILL PROVIDE, IN A TIMELY MANNER, FINANCIAL STATEMENTS AND GOVERNING DOCUMENTS INCLUDING ITS CONFLICT OF INTEREST POLICY WHEN REQUESTED IN WRITING OR IN PERSON.