2019-11-07T10:16:44-00:00 2018-12-31 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2018-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTY DUNLEAVY TREASURER 2019-11-06 true KRISTINA MORGAN CPA 6022302700 2019-11-07 68.226.18.216 2019-11-07 17:15:04 MS P 5E138E3DC04C7C0089134CC6E203F13F13D4A0B2 62E43348EE3C7DAB2011D4FB068CA8D1BCB2AB31 2018 2020-03-31 21:24:44Z Sharon Lagas 1608 E Briarwood Terrace Phoenix AZ 85048 817964 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 60 0 658922 803620 0 950 1874 4429 1500 664301 806994 102000 279500 0 120140 127674 2000 24633 205514 284599 427654 693773 236647 113221 930216 1206840 10510 173913 919706 1032927 X 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 275000 275000 COMPETITIVE RESEARCH FUNDING PROGRAM. THE ASF RESEARCH PROGRAM IS FUNDED IN LARGE PART BY THE ANNUAL CAMPAIGN FOR HEALTHY KIDNEYS AS WELL AS OTHER FUNDRAISING EVENTS. ASF HAS DEVELOPED STRATEGIC ALLIANCES AND INTERNATIONAL PARTNERSHIPS TO INCREASE THE RESOURCES APPLIED TO FINDING NOVEL TREATMENTS AND A CURE. SINCE 2010, ASF AND ITS PARTNERS HAVE PROVIDED MORE THAN 2 MILLION DOLLARS ON RESEARCH PROJECTS FOR ALPORT SYNDROME THAT HAVE FOCUSED ON CORRECTING THE GENETIC DEFECT IN CELLS DERIVED FROM PATIENTS, BASIC SCIENCE ON THE STRUCTURES OF THE KIDNEY THAT AFFECT THE BASEMENT MEMBRANE AND DISEASE PROGRESSION, PROTEIN REPLACEMENT THERAPY, MICRORNA THERAPY, ANTIBODY THERAPY, AND DRUG REPURPOSING. 155819 4500 PATIENT MEETINGS. ASF SPONSORS PATIENT MEETINGS AND CONFERENCES TO BRING THE PATIENTS AND EXPERTS TOGETHER TO EMPOWER THOSE AFFECTED BY ALPORT SYNDROME WITH INFORMATION AND SUPPORT. ASF HAS CONNECTED MORE THAN 7,000 PATIENTS, FAMILIES, RESEARCHERS AND PHYSICIANS IN AT LEAST 74 COUNTRIES. IT IS ESTIMATED THERE ARE 30,000 - 60,000 ALPORT SYNDROME PATIENTS IN THE USA, BUT THE DISEASE IS OFTEN MISDIAGNOSED OR UNDIAGNOSED UNTIL KIDNEY FAILURE IS IMMINENT. PATIENTS THEN NEED INFORMATION AND SUPPORT SWIFTLY. TEEN/ YOUNG ADULT SUPPORT PROGRAM ASF PROVIDES SPECIALIZED SUPPORT TO THIS AGE GROUP, PARTICULARLY HARD HIT BY THIS DISEASE, INCLUDING SPECIAL PROGRAMS AT FAMILY CONFERENCES, A DEDICATED FACEBOOK PAGE CALLED ALPORT AVENGERS, AND SPONSORING THE PAUL SILVER TRIBUTE AWARDS. 177534 1500 608353 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 false false false false false false false false false false false false false false false false false false false false true 15 0 true 1 true false false false false false false false false false false false false X 8 8 true false 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 SHARON LAGAS CHAIR 040.00 X X 0 0 0 ANDREW KRONENBERG VICE CHAIR 005.00 X X 0 0 0 MARTIN DUNLEAVY TREASURER 005.00 X X 0 0 0 RYAN LINDER SECRETARY 003.00 X 0 0 0 LISA BONEBRAKE DIRECTOR 003.00 X 0 0 0 MICHAEL PANELLA DIRECTOR 010.00 X 0 0 0 ANDRE WEINSTOCK DIRECTOR 003.00 X 0 0 0 PHILLIP KUMNICK DIRECTOR FROM 04/2018 003.00 X 0 0 0 VINT DEGRAW DIRECTOR THRU 5/2018 005.00 X 0 0 0 STANLEY SILVER DIRECTOR THRU 8/2018 030.00 X 0 0 0 GINA PARZIALE EXECUTIVE DIRECTOR 050.00 X 108014 0 7452 108014 7452 1 false false false 24181 779439 803620 1874 1874 10970 24181 10970 UNREIMBURSED OFFICER EXPENSES 900099 1500 1500 1500 806994 1500 1874 25000 25000 4500 4500 250000 250000 0 116966 93573 11696 11697 0 0 0 0 10708 8566 1071 1071 0 1101 881 110 110 12170 9736 1217 1217 0 2000 2000 0 82340 50080 32260 0 17411 2489 8767 6155 16827 12874 1609 2344 0 0 264 264 0 150340 150340 0 0 0 4146 314 3793 39 0 693773 608353 60787 24633 267567 505118 551379 593254 110000 108161 1270 307 930216 1206840 10510 23913 150000 10510 173913 X 799706 849766 120000 183161 919706 1032927 930216 1206840 X 113221 X false true X true false X 223593 270761 374905 658922 803620 2331801 223593 270761 374905 658922 803620 2331801 863251 1468550 295 553 505 950 1874 4177 3598 3598 2339576 29671 0.62770 0.71610 X 0.00000 0.00000 Part II Section A Line 1 TWO UNUSAL GRANTS HAVE BEEN EXCLUDED FROM THE CALCULATION - 158,759 HAS BEEN EXCLUDED FROM 2014 COLUMN A, LINE 1 AND 200,000 HAS BEEN EXCLUDED FROM 2016 COLUMN C, LINE 1 . Part II Section B Line 9 FOLLOWING THE IRS SCHEDULE A INSTRUCTIONS FOR LINE 9, FOR YEARS IN WHICH FUNDRAISING EXPENSES EXCEED FUNDRAISING REVENUE, THEN NO AMOUNT - 0 - HAS BEEN REPORTED ON SCHEDULE A, LINE 9. NET FUNDRAISING EVENT REVENUE REPORTED ON SCHEDULE A, LINE 9 COORDINATES TO THE FORM 990, PART VIII, LINE 8C NET INCOME OR LOSS FROM FUNDRAISING EVENTS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 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 808494 1500 1500 806994 806994 695273 1500 1500 693773 693773 V 4 THE ORGANIZATIONS TEMPORARILY RESTRICTED NET ASSETS WERE RESTRICTED FOR THE FOLLOWING RESEARCH GRANTS AND 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. true Europe Including Iceland and Greenland RESEARCH ON ALPORT SYNDROME RESEARCH ON ALPORT SYNDROME 150000 East Asia and the Pacific RESEARCH ON ALPORT SYNDROME RESEARCH ON ALPORT SYNDROME 100000 250000 250000 Europe Including Iceland and Greenland Research Funding 50000 Wire Transfer Europe Including Iceland and Greenland Research Funding 100000 Wire Transfer East Asia and the Pacific Research Funding 100000 Wire Transfer 3 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 35151 24181 10970 481 635 396 9458 35151 24181 10970 481 635 396 9458 10970 true UNIVERSITY OF MIAMI 1580 NW 10TH AVE MIAMI FL 33136 590624458 501 C3 25000 RESEARCH FUNDING 1 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. Form 990, Part III, Line 4d Program Service Expenses 42,324, Grants and allocations 0, Revenue 0 MEDICAL AND SCIENTIFIC CONFERENCES. ASF RAISES AWARENESS OF CURRENT CLINICAL GUIDELINES, HELPS PROMOTE EMERGING RESEARCH AND CURRENT CLINICAL TRIALS AT MEDICAL CONFERENCES, AS WELL AS SPONSORS MEDICAL AND SCIENTIFIC SYMPOSIUMS AT EVENTS SUCH AS THE AMERICAN SOCIETY OF NEPHROLOGY KIDNEY WEEK, ONE OF THE LARGEST RENAL MEETINGS IN THE WORLD, AND THE INTERNATIONAL PEDIATRIC NEPHROLOGY ASSOCIATION CONGRESS. Form 990, Part III, Line 4d Program Service Expenses 0, Grants and allocations 0, Revenue 0 INTERNATIONAL ALPORT SYNDROME COLLABORATION. ASF IS WORKING WITH GLOBAL STAKEHOLDERS PATIENTS, CLINICIANS, RESEARCHERS, AND PHARMA INDUSTRY TO DEVELOP A STRATEGIC RESEARCH AGENDA TO FACILITATE THE DEVELOPMENT OF NOVEL TREATMENTS AND ADDRESS UNMET NEEDS IN RESEARCH AND PATIENT CARE. ASF HAS SPONSORED OR CO-SPONSORED 2 INTERNATIONAL RESEARCH WORKSHOPS AND 2 SCIENTIFIC MEETINGS. Form 990, Part III, Line 4d Program Service Expenses 135,210, Grants and allocations 0, Revenue 1,500 ADVOCACY. ASF AND ITS MEMBERS PARTICIPATE IN COLLABORATIVE ADVOCACY EVENTS TO RAISE AWARENESS OF ISSUES RELATED TO ALL KIDNEY AND RARE DISEASES, AS WELL AS ALPORT SYNDROME. ASF HAS SUPPORTED EVENTS COORDINATED BY THE NATIONAL KIDNEY FOUNDATION, AMERICAN SOCIETY OF NEPHROLOGY, NATIONAL ORGANIZATION OF RARE DISORDERS, AND THE RARE DISEASE LEGISLATIVE ADVOCATES. ONLINE INFORMATION AND RESOURCES. ASFS WEBSITE ENSURES THAT CLEAR AND ACCURATE INFORMATION ABOUT ALPORT SYNDROME IS READILY AVAILABLE. RESOURCES INCLUDE EDUCATIONAL MATERIALS, WEBINARS, CLINICAL GUIDELINES, AND VIDEOS FROM PATIENT AND MEDICAL CONFERENCES. SOCIAL MEDIA, BLOG AND MONTHLY E-NEWSLETTER. ASF ACTIVELY USES FACEBOOK, TWITTER, INSTAGRAM, AND YOUTUBE, MAINTAINS A PRIVATE FACEBOOK SUPPORT GROUP AND DISSEMINATES A MONTHLY E-NEWSLETTER TO PROVIDE THE LATEST ALPORT SYNDROME DEVELOPMENTS AND ONGOING COMMUNICATION AND SUPPORT. ASF ALSO HAS A BLOG TO HIGHLIGHT ISSUES OF IMPORTANCE TO THE ALPORT SYNDROME COMMUNITY. Form 990, Part VI, Section A, Line 2 CHAIR SHARON LAGAS, AND DIRECTOR STANLEY SILVER, ARE RELATED AS DEFINED BY THE IRS DEFINITION OF RELATIVE. 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 XI, Line 8 OTHER CONTRACT SERVICES 82,340, PATIENT SUPPORT EDUCATION CONSULANTS 50,080, PROGRAM 50,080, ADMIN -0-, FUNDRAISING -0- ADMINISTRATIVE SUPPORT 30,940, PROGRAM -0-, ADMIN 30,940, FUNDRAISING -0- PAYROLL PROCESSING FEES 1,320, PROGRAM -0-, ADMIN 1,320, FUNDRAISING -0-.