2015-05-09T07:21:55-00:00 2014-12-31 SECHLER CPA PC 921 E ORANGE DRIVE PHOENIX AZ 85014 990 2014-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 STANLEY SILVER TREASURER 2015-05-09 true CAROLYN SECHLER 6022302700 2015-05-09 2014 2016-02-25 16:41:14Z STAN SILVER 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 391549 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. 7 7 0 60 0 206350 382352 0 286 295 173 4398 206809 387045 127250 156050 0 0 0 13059 91962 91934 219212 247984 -12403 139061 353476 492809 2627 353476 490182 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 150000 150000 1. AWARDED RESEARCH FUNDING TO DR. STEFANO DA SACCO OF THE CHILDRENS HOSPITAL OF LOS ANGELES FOR HIS ONE-YEAR STUDY THAT WILL CONTINUE THE RESEARCH INTO PODOCYTE INFLUENCE IN ALPORT SYNDROME. HIS PROJECT WAS PODOCYTE RESPONSE TO INJURY IN ALPORT SYNDROME AN ANSWER FROM HUMAN AMNIOTIC FLUID KIDNEY PROGENITORS. SUPPORT OF DR. CLIFFORD KASHTAN, UNIVERSITY OF MINNESOTA MEDICAL FOUNDATION FOR THE EXPANSION AND CONTINUATION OF THE ALPORT SYNDROME TREATMENTS AND OUTCOMES REGISTRY. 13512 5000 SPONSORED OR CO-SPONSORED TWO INTERNATIONAL RESEARCH WORKSHOPS IN BOTH PHILADELPHIA, PA AND OXFORD UNIVERSITY, UK WITH RESEARCHERS, PHYSICIANS AND PHARMA IN ATTENDANCE RESULTING IN CONTINUED INTERNATIONAL COLLABORATION AND EXPANDING INTEREST INTO ALPORT SYNDROME RESEARCH. 41394 50 ATTENDED AND EXHIBITED AT THE AMERICAN SOCIETY OF NEPHROLOGY KIDNEY WEEK IN PHILADELPHIA, PA IN NOVEMBER 2014 INCREASING AWARENESS AND DISTRIBUTING EDUCATIONAL INFORMATION TO THE OVER 13,000 MEDICAL AND RESEARCH COMMUNITY ATTENDEES. MET WITH MEMBERS OF THE ASF MEDICAL ADVISORY COMMITTEE AND KEY RESEARCHERS TO DISCUSS 2014 PERFORMANCE AND PLAN FOR 2015. PARTICIPATED IN THE FIRST KIDNEY PATIENT SUMMIT ON CAPITAL HILL WITH 13 OTHER KIDNEY ORGANIZATIONS ORGANIZED BY THE NATIONAL KIDNEY FOUNDATION. 10469 1050 215375 true true false false false false false false false false false false false false true true true false false false true true false false true false false true true false false false false false false false false false false false false false false false false false false true 9 0 0 false false false false false false false false false false X 7 7 true false false false false false false true true false false true true true true true true false false false AZ FL IL KY NH NJ NY PA UT X STANLEY SILVER 4804733209 30042 N 77TH PLACE SCOTTSDALE AZ 85266 X SHARON LAGAS PRESIDENT 030.00 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 JEFFERY ROSS DIRECTOR 015.00 X 0 0 0 MICHAEL PANELLA DIRECTOR 010.00 X 0 0 0 JANE SCHNEIROV DIRECTOR 002.00 X 0 0 0 KAREN GAYLORD DIRECTOR 002.00 X 0 0 0 false false false 50020 332332 382352 295 295 50020 4504 -4504 -4504 UNREIMBURSED OFFICER EXPENSES 900099 8902 8902 8902 387045 8902 -4209 X 150050 150050 1000 1000 5000 5000 0 0 0 0 0 0 0 0 4249 3399 425 425 9425 4820 4002 603 0 0 29002 13266 9551 6185 0 7728 4525 1788 1415 6055 4838 606 611 0 0 6639 6639 0 17512 17512 0 0 0 2286 754 1532 BANK AND CREDIT CARD FEED 5504 1693 1636 2175 PROGRAM EXHIBIT MATERIALS , SUPPLIES 1879 1879 REGISTRATION FEES 1655 10 1645 0 247984 215375 19550 13059 226431 214204 126142 276437 1000 903 1168 353476 492809 2627 0 2627 X 353476 490182 353476 490182 353476 492809 139061 -2355 X true X false true false X 87529 197405 216610 206350 223593 931487 87529 197405 216610 206350 223593 931487 47482 884005 216 313 327 286 295 1437 932924 273683 0.94760 0.92390 X 0.00000 0.00000 Part II Section A Line 1 UNUSUAL GRANT EXCLUDED FROM CONTRIBUTIONS FOR 2014 158,759. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false Financial derivatives and other financial products Closely-held equity interests Federal income taxes X 391549 4504 4504 387045 387045 252488 4504 4504 247984 247984 X 2 AT DECEMBER 31, 2014 THE FOUNDATION HAD NO UNCERTAIN TAX POSITIONS THAT QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. XI 2 D OTHER FUNDRAISING EXPENSES REPORTED IN REVENUE FOR TAX RETURN REPORTING PURPOSES. XII 2 D OTHER FUNDRAISING EXPENSES REPORTED IN REVENUE FOR TAX RETURN REPORTING PURPOSES. true East Asia and the Pacific SYMPOSIUM ON ALPORT SYNDROME RESEARCH SYMPOSIUM 8138 8138 8138 Europe Including Iceland and Greenland RESEARCH 5000 WIRE TRANSFER 1 ALPORT UK RESEARCH Europe Including Iceland and Greenland 1 5000 WIRE TRANSFER 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. ARIZONA 5K RACE 50020 50020 2235 500 250 1519 50020 50020 2235 500 250 1519 4504 -4504 true ALPORT SYNDROME TREATMENT AND OUTCOMES REGISTRY 200 OAK STREET SE SUITE 500 MINNEAPOLIS MN 554552010 416042488 501 C 3 50000 PATIENT REGISTRY CHILDREN'S HOSPITAL OF LOS ANGELES 4650 SUNSET BLVD LOS ANGELES CA 90027 951690977 501 C 3 100000 RESEARCH FUNDING 2 EDUCATION RESEARCH 1 1000 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 9,469, Grants and allocations 50, Revenue 0 CONTINUED TO INCREASE AWARENESS AND OUTREACH TO THE PATIENT COMMUNITY THROUGH UPGRADES TO THE ASF WEBSITE INCLUDING A REDESIGN TO BE MOBILE-FRIENDLY, INCREASED SOCIAL MEDIA EXPOSURE WITH THE ADDITION OF INSTAGRAM AND ASF YOU TUBE CHANNEL AND INSTITUTED THE FIRST ALPORT AWARENESS MONTH. LAUNCHED A NEW SUPPORT GROUP ON FACEBOOK IN ADDITION TO THE PUBLIC PAGE AND ALPORT AVENGERS TEEN AND YOUNG ADULT PAGE. Form 990, Part III, Line 4d Program Service Expenses 1,000, Grants and allocations 1,000, Revenue 0 AWARDED TWO STUDENTS WITH THE PAUL SILVER TRIBUTE AWARD IN A PAY IT FORWARD MANNER TO ENCOURAGE PERSONAL GROWTH AND A SENSE OF EMPOWERMENT. 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 ORGANIZATION DOES NOT CURRENTLY HAVE ANY PAID OFFICERS OR EMPLOYEES. HOWEVER, A COMPENSATION POLICY IS IN PLACE THAT WOULD REQUIRE THE BOARD AS WHOLE, OR THE EXECUTIVE COMMITTEE TO REVIEW THE COMPENSATION FOR ALL OFFICERS OR KEY EMPLOYEES BY COMPARING THEIR COMPENSATION TO THE COMPENSATION OF INDIVIDUALS IN LIKE POSITIONS , IN COMPARABLE ORGANIZATIONS USING FORMS 990, COMPENSATION STUDIES, AND OTHER AVAILABLE DATA. THE BOARD OR COMMITTEE WOULD THEN APPROVE ANY CHANGES TO THE COMPENSATION AGREEMENT BASED ON THIS INFORMATION. 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, Section 1, Line 11 G OTHER FEES FOR SERVICES THE ORGANIZATION HIRED A EVENT CONSULTANT TO ASSIST WITH PROGRAM SYMPOSIUMS AND MEETING LOGISTICS, AND AN ADMINISTRATIVE ASSISTANT.