2020-11-03T03:37:34-00:00 2019-12-31 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2019-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTY DUNLEAVY TREASURER 2020-11-03 true KRISTINA MORGAN CPA 6022302700 2020-11-03 72.208.102.51 2020-11-03 19:40:16 MS P 9DF23E0F1646A68D5B7A96BF3F8BB77D18292F91 AE85F118FF4DB139F5F4296939BFED2C27E5138B 2019 2021-01-29 14:40:06Z Andrew Kronenberg PO Box 4130 Scottsdale AZ 85261 567009 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 2 8 0 803620 548370 0 1874 2508 1500 1157 806994 552035 279500 338067 0 127674 87776 2000 0 22968 284599 230205 693773 656048 113221 -104013 1206840 1069034 173913 140120 1032927 928914 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 566980 338067 AWARDED 250,000 IN RESEARCH FUNDS. INCREASED SUPPORT FOR PATIENT REGISTRY. HELD THE LARGEST PATIENT MEETING TO DATE WITH 118 ATTENDEES FROM 27 STATES. AWARDED 7,000 IN SCHOLARSHIPS FOR YOUNG PATIENTS. ADDED 5 MEDICAL ADVISORY MEMBERS. 566980 true true false false false false false false false true false false false false false true true false false false true false false false true false false true true false false false false false false true true true false false false false false false false false false true 10 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 PREMIUM ORGANIZATION 6028402900 PO BOX 4130 SCOTTSDALE AZ 85261 GINA PARZIALE EXECUTIVE DIRECTOR TO 7/2019 040.00 X 73815 0 2798 ANDREW KRONENBERG CHAIR 005.00 X X 0 0 0 RYAN LINDER SECRETARY 005.00 X X 0 0 0 MARTIN DUNLEAVY TREASURER 005.00 X X 0 0 0 SHARON LAGAS CO-FOUNDER PAST CHAIR 005.00 X X 0 0 0 ANDRE WEINSTOCK DIRECTOR 005.00 X 0 0 0 PHILLIP KUMNICK DIRECTOR 005.00 X 0 0 0 JENNIFER BEAUCHAMP DIRECTOR FROM 2/2019 005.00 X 0 0 0 JANINE REED DIRECTOR FROM 12/2019 005.00 X 0 0 0 LISA BONEBRAKE EXEC DIR FROM 8/2019/ DIR.COMM. TO 7/2019 040.00 X 0 0 0 73815 2798 false false false 739 29807 517824 548370 2508 2508 14974 29807 14974 UNREIMBURSED OFFICER EXPENSES 900099 1157 1157 1157 552035 1157 2508 X 331067 331067 7000 7000 0 0 65112 52090 6511 6511 0 13353 10683 1335 1335 0 100 80 10 10 9211 7369 921 921 61991 49593 6199 6199 1814 1814 11376 11376 0 0 30162 9979 18935 1248 366 366 21301 1848 14667 4786 7712 5450 681 1581 0 0 1726 1726 0 91734 91734 0 0 0 2023 87 1925 11 0 656048 566980 66100 22968 505118 440557 593254 595761 108161 20123 307 2803 9790 1206840 1069034 23913 8120 150000 132000 173913 140120 X 849766 908791 183161 20123 1032927 928914 1206840 1069034 -104013 X false true X true false X 270761 374905 558922 703620 548370 2456578 270761 374905 558922 703620 548370 2456578 1017343 1439235 553 505 950 1874 2508 6390 3598 3598 2466566 17989 0.58350 0.62770 X 0.00000 0.00000 Part II Section A Line 1 THREE UNUSUAL GRANTS HAVE BEEN EXCLUDED FROM THE CALCULATION - 200,000 HAS BEEN EXCLUDED FROM THE 2016 COLUMN C, LINE 1 AND 100,000 HAS BEEN EXCLUDED FROM BOTH THE 2017 COLUMN D AND THE 2018 COLUMN E. THE AMOUNTS FOR THE 2017 AND 2018 COLUMNS ARE ADJUSTMENTS FROM THE PRIOR YEAR BASED ON A REVIEW OF THE GRANTS AND THEIR PROPER STATUS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 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 556989 1000 3954 4954 552035 552035 661002 1000 3954 4954 656048 656048 V 4 THE ORGANIZATIONS DONOR RESTRICTED NET ASSETS WERE RESTRICTED FOR THE FOLLOWING TIME RESTRICTIONS ON CONTRIBUTIONS RECEIVABLE. 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. XI 2 d OTHER 3,954 OF TRAVEL AND CONFERENCE EXPENSE REIMBURSEMENTS REPORTED IN REVENUE FOR AUDIT, NETTED WITH CONFERENCE EXPENSE FOR TAX RETURN. XII OTHER 3,954 OF TRAVEL AND CONFERENCE EXPENSE REIMBURSEMENTS REPORTED IN REVENUE FOR AUDIT, NETTED WITH CONFERENCE EXPENSE FOR TAX RETURN. true Europe Including Iceland and Greenland Research Conference on Alport Syndrome Research Conference on Alport Syndrome 14418 14418 14418 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. ARIZONA 5K RACE 44781 29807 14974 250 1338 650 550 12186 44781 29807 14974 250 1338 650 550 12186 14974 true Alport Syndrome Treatment & Outcomes Registry 200 Oak Street Ste 500 Minneapolis MN 554552010 416042488 501 C 3 81067 ASTOR Patient Registry Jackson Laboratory PO Box 254 Bar Harbor ME 04609 010211513 501 C 3 125000 Research Funding Washington University Dr Jeffrey Miner Renal Division 660 S Euclid Ave St Louis MO 63110 430653611 501 C 3 125000 Research Funding 3 Paul Silver Tribute Awards 6 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 EACH YEAR ASF SPONSORS THE PAUL SILVER TRIBUTE AWARD FOR STUDENTS AND YOUNG ADULTS WITH ALPORT SYNDROME. APPLICANTS ARE EVALUATED BASED ON AN ESSAY AND OUTSIDE RECOMMENDATIONS AND ON THE POTENTIAL IMPACT OF THE AWARD. THE AWARD CAN BE USED FOR EDUCATION, TO COMPLETE A PROJECT, OR PURSUE AN ACTIVITY THAT WILL ENHANCE THE APPLICANTS LIFE. LBONEBRAKE LLC OFFICER OWNED 61991 MANAGEMENT/COMMUNICATION SERVICES false Part IV Line 1 THE ORGANIZATION ENTERED INTO AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC. LISA BONEBRAKE, THE OWNER OF LBONEBRAKE LLC, BEGAN ACTING AS THE EXECUTIVE DIRECTOR OF THE ORGANIZATION IN AUGUST 2019. PREVIOUSLY, HER ORGANIZATION WAS UTILITZED FOR COMMUNICATIONS AND LISA BONEBRAKE HAD THE TITLE OF DIRECTOR OF COMMUNICATIONS. LISA IS THE SOLE OWNER OF LBONEBRAKE LLC. Form 990, Part VI, Section B, Line 3 WHEN THE PREVIOUS EXECUTIVE DIRECTOR LEFT THE ORGANIZATION IN JULY 2019, THE ORGANIZATION HIRED A MANAGEMENT FIRM, PRIMA PRONTO LLC DBA LBONEBRAKE LLC TO REPLACE THIS ROLE. THE OWNER OF LBONEBRAKE LLC, LISA BONEBRAKE, HAD THE ROLE OF THE EXECUTIVE DIRECTOR FOR THE ORGANIZATION BEGINNING IN AUGUST 2019. LBONEBRAKE LLC WAS PAID 61,991 DURING 2019 FOR ALL SERVICES PROVIDED TO THE ORGANIZATION. 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. AT THE FIRST MEETING OF THE BOARD FOLLOWING THE FILING OF THE 990 WITH THE IRS, THE COMPLETE FORM 990 IS PRESENTED TO THE BOARD BY THE ORGANIZATIONS LEAD OFFICERS WITH RESPONSIBILITY OVER THE FORM 990S REVIEW THEREAFTER, QUESTIONS ARE TAKEN AND THE FORM, ITS PREPARATION, AND ITS PUBLIC RELATION IMPACT IS DISCUSSED. 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. Form 990, Part IX, Line 11 G OTHER CONTRACT SERVICES 30,162, PATIENT SUPPORT EDUCATION CONSULANTS 12,474, PROGRAM 12,474, ADMIN -0-, FUNDRAISING -0- ADMINISTRATIVE SUPPORT 15,882, PROGRAM -0-, ADMIN 15,882, FUNDRAISING -0- PAYROLL PROCESSING FEES 1,806, PROGRAM -0-, ADMIN 1,806, FUNDRAISING -0-.