2021-08-05T12:48:01-00:00 2020-12-31 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2020-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTY DUNLEAVY TREASURER 2021-08-05 true MARTY DUNLEAVY TREASURER 999009999 KRISTINA MORGAN CPA P01370742 6022302700 2021-08-05 3 AAL1 IAL1 2020 2022-09-23 18:48:47Z Andrew Kronenberg PO Box 4130 Scottsdale AZ 85261 740577 false X WWW.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 1 83 0 548370 738310 0 2508 707 1157 -465 552035 738552 338067 167289 0 87776 73636 0 23103 230205 197325 656048 438250 -104013 300302 1069034 1307819 140120 78603 928914 1229216 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 376560 167289 PROVIDED ONE 125,000 RESEARCH GRANT, PROVIDED 4 PAUL SILVER AWARD GRANTS TO YOUNG PATIENTS, CONDUCTED LARGEST PATIENT MEETING TO DATE WITH 352 REGISTRANTS FROM 40 STATES AND 10 COUNTRIES. 376560 true true false false false false false false false true false false false false false true true false false false true true false false true false false true true false false false false false false false false true false false false false false false false false false true 6 0 true 1 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 PREMIUM ORGANIZATION 6028402900 4248 N CRAFTSMAN COURT NO 200 SCOTTSDALE AZ 85261 X ANDREW KRONENBERG CHAIR 006.00 X X 0 0 0 RYAN LINDER SECRETARY 002.00 X X 0 0 0 MARTIN DUNLEAVY TREASURER 005.00 X X 0 0 0 SHARON LAGAS CO-FOUNDER PAST CHAIR 004.00 X X 0 0 0 ANDRE WEINSTOCK DIRECTOR 008.00 X 0 0 0 JANINE REED DIRECTOR 006.00 X 0 0 0 PHILLIP KUMNICK DIRECTOR 002.00 X 0 0 0 JENNIFER BEAUCHAMP DIRECTOR 002.00 X 0 0 0 LISA BONEBRAKE EXECUTIVE DIRECTOR 040.00 X 0 0 0 false false false 1291 48871 688148 738310 707 707 1560 48871 2025 -465 -465 738552 242 35289 35289 7000 7000 125000 125000 0 0 0 63928 51142 6393 6393 0 4817 3854 481 482 4891 3913 489 489 83339 54371 24801 4167 0 22430 19144 893 2393 0 0 12082 11638 222 222 4100 4100 15919 8590 3890 3439 31902 31902 0 0 3679 2943 368 368 0 13372 13372 0 0 6179 4943 618 618 4323 3459 432 432 0 438250 376560 38587 23103 440557 1021874 595761 243543 20123 18324 2803 2967 9790 21111 1069034 1307819 8120 16103 132000 62500 140120 78603 X 908791 1100012 20123 129204 928914 1229216 1069034 1307819 300302 X false true X true false X 374905 558922 703620 548370 738310 2924127 374905 558922 703620 548370 738310 2924127 1373073 1551054 505 950 1874 2508 707 6544 3598 3598 2934269 9515 0.52860 0.58350 X Part II Section A Line 1 THREE UNUSUAL GRANTS HAVE BEEN EXCLUDED FROM THE CALCULATION - 200,000 HAS BEEN EXCLUDED FROM THE 2016 COLUMN A, LINE 1 AND 100,000 HAS BEEN EXCLUDED FROM BOTH THE 2017 COLUMN B AND THE 2018 COLUMN C. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 20123 307458 178254 20123 129204 183161 220123 275000 108161 20123 120000 183161 120000 183161 20000 120000 20000 120000 20000 20000 1.00000 false false Financial derivatives and other financial products Closely-held equity interests Federal income taxes X 740052 1500 1500 738552 738552 439750 1500 1500 438250 438250 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 Europe Including Iceland and Greenland Professional Services Professional Services 2972 North America Research on Alport Syndrome Grant Award for Research on Alport Syndrome 125000 127972 127972 North America Research Funding 125000 Wire Transfer 1 false false false false false false 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 3 THE ORGANIZATION REPORTS ALL EXPENDITURES BASED ON THE ACCRUAL ACCOUNTING METHOD. Part II Line 1 THE ORGANIZATION REPORTS ALL EXPENDITURES BASED ON THE ACCRUAL ACCOUNTING METHOD. San Diego 5K Race 50431 48871 1560 1420 605 50431 48871 1560 1420 605 2025 -465 true Alport Syndrome Treatment & Outcomes Registry 200 Oak Street Ste 500 Minneapolis MN 554552010 416042488 501 C 3 35289 ASTOR Patient Registry 1 Paul Silver Tribute Awards 4 7000 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. LBONEBRAKE LLC OFFICER OWNED 83339 MANAGEMENT/COMMUNICATION 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 B, 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 WAS PAID 83,339 FOR THE SERVICES PROVIDED DURING 2020. Form 990, Part VI, Section B, Line 11 B 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 12 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 A B 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, COPIES OF ALL GOVERNING DOCUMENTS INCLUDING ITS CONFLICT OF INTEREST POLICIES AND FINANCIAL STATEMENTS WHEN REQUESTED IN WRITING OR IN PERSON.