2023-09-14T09:46:36-00:00 2022-12-31 822851604 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2022-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTY DUNLEAVY TREASURER 4808003510 2023-09-14 true MARTY DUNLEAVY 999009999 KRISTINA MORGAN CPA P01370742 6022302700 2023-09-14 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z ANDREW KRONENBERG PO BOX 4130 SCOTTSDALE AZ 85261 990673 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. 8 8 2 249 0 993479 990503 0 47 170 0 993526 990673 163500 100268 0 85258 145098 0 24139 229262 254089 478020 499455 515506 491218 1762638 2277966 17916 42491 1744722 2235475 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 422730 100268 STRENGTHENED AND EXPANDED PATIENT RESOURCES FACILITATED 15 DIRECT CONNECT VIRTUAL MEETINGS TO CONNECT PATIENTS TO ONE ANOTHER CENTERED AROUND TOPICS OF IMPORTANCE TO OUR COMMUNITY. COMPLETED A DOWNLOADABLE FAMILY PLANNING GUIDE AS A RESOURCE FOR PATIENTS LIVING WITH OUR RARE GENETIC KIDNEY DISEASE, LED BY THE EFFORTS OF OUR EMERGING LEADERSHIP COUNCIL OF 10 VOLUNTEERS WHO HELP ADDRESS THE UNMET NEEDS OF PATIENTS IN THEIR 20S AND 30S. EXPANDED OUR WEBSITE WITH NUMEROUS NEW PAGES, INCLUDING MENTAL HEALTH RESOURCES, PARENT/CAREGIVER TIPS, PODCAST APPEARANCES, AND MORE. IMPLEMENTED A 3-MONTH FOLLOW-UP SYSTEM FOR NEW MEMBERSHIP REGISTRANTS, WITH OUR PATIENT ENGAGEMENT COORDINATOR REACHING BACK OUT TO BE SURE NEW QUESTIONS ARE ANSWERED. COMPLETELY RESTRUCTURED PATIENT VOLUNTEER OPPORTUNITIES, INCLUDING NUMEROUS NEW WAYS TO HELP THE FOUNDATION, OR PARTICIPATE IN RESEARCH EFFORTS OVERSEEN BY MEMBERS OF ASFS SCIENTIFIC ADVISORY RESEARCH NETWORK. 422730 true true false false false false false false false true false false false false true false true false false false false false false false false false false true true false false false false false false false false false true false false false false false false false false false true 8 0 true 2 true false false false false false false false false false false false false X 8 8 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 CHAIR 003.00 X X 0 0 0 RYAN LINDER SECRETARY 001.00 X X 0 0 0 MARTIN DUNLEAVY TREASURER 003.00 X X 0 0 0 SHARON LAGAS CO-FOUNDER DIRECTOR 002.00 X X 0 0 0 ANDRE WEINSTOCK RESEARCH CHAIR DIRECTOR 008.00 X 0 0 0 JANINE REED DIRECTOR 006.00 X 0 0 0 PHILLIP KUMNICK DIRECTOR 001.00 X 0 0 0 STEPHEN MALACH DIRECTOR 002.00 X 0 0 0 LISA BONEBRAKE EXECUTIVE DIRECTOR 065.00 X 0 0 0 false false false 971 989532 13324 990503 170 170 990673 170 92268 92268 8000 8000 0 0 0 0 134582 126507 6729 1346 0 0 10516 9885 526 105 95437 71578 19087 4772 0 22960 6115 15622 1223 0 0 2863 1123 1740 12059 12059 23787 13543 6305 3939 57138 57138 0 0 3734 2924 637 173 0 17486 17486 0 0 13708 11789 1508 411 4917 4374 432 111 0 499455 422730 52586 24139 1444390 1885297 243568 243696 21146 48941 1530 3490 5824 12901 48514 81307 1762638 2277966 17916 15616 26875 17916 42491 X 1443264 1586866 301458 648609 1744722 2235475 1762638 2277966 491218 -465 X false true X true false X 703620 548370 738310 993479 990503 3974282 703620 548370 738310 993479 990503 3974282 2169540 1804742 1874 2508 707 47 170 5306 3979588 2657 0.45350 0.54000 X Part II Section A Line 1 UNUSUAL GRANT OF 100,000 WERE EXCLUDED IN 2018. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 301458 548941 180644 21146 648609 129204 421146 230568 18324 301458 20123 307458 178254 20123 129204 183161 220123 275000 108161 20123 120000 183161 120000 183161 1.00000 false false Financial derivatives and other financial products Closely-held equity interests Federal income taxes X 993763 -465 3555 3090 990673 990673 503010 3555 3555 499455 499455 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 91624 Natural History Study in Alport Syndrome Others under reporting threshold 501c3 644 2 Scholarships-Paul Silver Award 5 8000 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 95012 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 95,012 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.