2017-08-18T01:16:07-00:00 2016-12-31 SECHLER CPA PC 921 E ORANGE DRIVE PHOENIX AZ 85014 990 2016-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 STANLEY SILVER TREASURER 2017-08-18 true CAROLYN SECHLER 6022302700 2017-08-18 24.56.6.144 2017-08-18 20:12:42 MS P 3973010445A18CF9B0E9BBCBDAE878E56BCFD508 E259EE71697CF24F78ABE1C588D8C1629087F991 2016 2021-01-29 14:40:06Z X STAN SILVER 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 581437 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. 6 6 1 60 0 270761 574905 0 553 505 719 -4633 272033 570777 65000 176200 0 100902 0 20287 119677 238154 184677 515256 87356 55521 583786 772448 6248 89389 577538 683059 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 151200 151200 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. 25000 25000 ALPORT TREATMENTS AND OUTCOMES REGISTRY ASTOR. ASF PROVIDES FUNDING AND SUPPORT FOR PATIENT REGISTRY ASTOR BASED AT THE UNIVERSITY OF MINNESOTA. IN ADDITION, ASF HELPS RECRUIT PATIENTS AND FAMILY MEMBERS TO JOIN THE REGISTRY THROUGH EDUCATION ON THE SIGNIFICANCE OF A REGISTRY FOR CLINICAL STUDIES FOR A RARE DISEASE SUCH AS ALPORT SYNDROME 82961 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. 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. 193405 452566 true true false false false false false false false true false false false false false false 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 true 8 0 true 1 true false false false false false false false false false false X 6 6 true false false false false false false true true false false true true true true true true true false false AZ FL IL KY NH NJ NY PA UT X STANLEY SILVER 4804733209 30042 N 77TH PLACE SCOTTSDALE AZ 85266 SHARON LAGAS PRESIDENT 040.00 X X 0 0 0 VINT DEGRAW VICE PRESIDENT 003.00 X X 0 0 0 STANLEY SILVER TREASURER 030.00 X X 0 0 0 MICHAEL PANELLA DIRECTOR 010.00 X 0 0 0 JANE SCHNEIROV DIRECTOR 005.00 X 0 0 0 MARTIN DUNLEAVY DIRECTOR 003.00 X 0 0 0 GINA PARZIALE EXECUTIVE DIRECTOR 050.00 X 84442 0 0 84442 false false false 110459 464446 574905 505 505 110459 10660 -10660 -10660 UNREIMBURSED OFFICER EXPENSES 900099 4318 4318 OTHER REIMBURSEMENTS REBATES 900099 1709 1709 6027 570777 6027 -10155 26200 26200 0 150000 150000 0 94442 75554 9444 9444 0 0 0 0 6460 5168 646 646 0 3712 2970 371 371 14888 8870 4909 1109 0 0 5263 4127 1136 95 95 74817 45167 22715 6935 11309 9187 1061 1061 0 0 2417 2417 0 120930 120324 303 303 0 0 0 3228 2582 323 323 REGISTRATION FEES 1495 1495 0 515256 452566 42403 20287 305454 250661 276974 500429 20000 1358 1358 583786 772448 6248 14389 75000 6248 89389 X 577538 663059 20000 577538 683059 583786 772448 X 55521 50000 X false true X true false X 216610 206350 223593 270761 374905 1292219 216610 206350 223593 270761 374905 1292219 102589 1189630 327 286 295 553 505 1966 3532 3532 1297717 83013 0.91670 0.96580 X 0.00000 0.00000 Part II Section B Line 9 and Line 12 After careful consideration, fundraising events for Column a 2012, Column b 2013, Column c 2014, and Column d 2015 have been reported Net of fundraising event expenses on Line 9, of Schedule A, versus the gross fundraising event revenue reported within Line 12 of Schedule A. 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. Part II Section B 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. The change in reporting is a more conservative approach, reporting the fundraising event revenue as excluded under the not regularly carried on exemption of IRC 512, versus the exclusion of revenue under IRC 513. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false 20000 20000 1.00000 Financial derivatives and other financial products Closely-held equity interests Federal income taxes 575102 4325 4325 570777 570777 519581 4325 4325 515256 515256 V 4 THE ORGANIZATIONS TEMPORARILY RESTRICTED NET ASSETS WERE RESTRICTED BASED ON TIME RESTRICTIONS FOR CONTRIBUTIONS RECEIVABLE AND WILL BE USED FOR FUTURE SPECIAL EVENTS AND/OR RESEARCH GRANTS. true North America RESEARCH ON ALPORT SYNDROME RESEARCH ON ALPORT SYNDROME 50000 East Asia and the Pacific RESEARCH ON ALPORT SYNDROME RESEARCH ON ALPORT SYNDROME 100000 150000 150000 North America RESEARCH ON ALPORT SYNDROME 50000 CHECK East Asia and the Pacific RESEARCH ON ALPORT SYNDROME 100000 WIRE TRANSF 2 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 54333 54333 3657 635 200 4070 ALL OTHER RACES 56126 56126 2098 110459 110459 3657 635 200 6168 10660 -10660 true ALPORT SYNDROME TREATMENT AND OUTCOMES REGISTRY 200 OAK STREET SE SUITE 500 MINNEAPOLIS MN 554552010 416042488 501 C 3 50000 PATIENT REGISTRY 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 30,703, 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 10,093, 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 152,609, Grants and allocations 0, Revenue 0 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 PRESIDENT SHARON LAGAS, AND TREASURER 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 PRIOR PERIOD ADJUSTMENT OF 50,000, PLEDGE RECEIVABLES AND REVENUE COLLECTED IN CURRENT YEAR RELATED TO PRIOR PERIODS.