2016-07-07T09:19:50-00:00 2015-12-31 SECHLER CPA PC 921 E ORANGE DRIVE PHOENIX AZ 85014 990 2015-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 STANLEY SILVER TREASURER 2016-07-07 true CAROLYN SECHLER 6022302700 2016-07-07 2015 2016-09-27 15:27:22Z STAN SILVER 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 279788 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 382352 270761 0 295 553 4398 719 387045 272033 156050 65000 0 0 0 12131 91934 119677 247984 184677 139061 87356 492809 583786 2627 6248 490182 577538 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 60000 60000 FUNDED A RESEARCH GRANT IN BASIC SCIENCE AT WASHINGTON UNIVERSITY, ST. LOUIS, MO. 57774 CONTINUED SUPPORT OF ASTOR ALPORT SYNDROME TREATMENTS AND OUTCOMES REGISTRY WITHOUT WHICH NO CLINICAL TRIALS CAN BE ORGANIZED. ASTOR IS HOUSED AT THE UNIVERSITY OF MINNESOTA, MINNEAPOLIS. THROUGH THE EXPANDED USE OF SOCIAL MEDIA, MOBILIZED THE PATIENT COMMUNITY FOR ALPORT AWARNESS MONTH HELD IN MARCH IN CONJUNCTION WITH NATIONAL KIDNEY MONTH, STARTED THE ASF BLOG TO PROVIDE ADDITIONAL EDUCATIONAL INFORMATION TO THE ALPORT COMMUNITY, DEVELOPED A PRIVATE FACEBOOK SUPPORT GROUP, CONTINUED USE OF PUBLIC FACEBOOK PAGE, INSTAGRAM, TWITTER, LINKEDIN AND ASF YOU TUBE CHANNEL. THROUGH THE ASF WEBSITE, CONTINUED TO PROVIDE INFORMATION ON CURRENT CLINICAL STUDIES AND REGISTRY PARTICIPATION AND REACHING OUT TO BOTH THE US AND INTERNATIONAL PATIENT COMMUNITY. 14604 5000 SUPPORTED AND SPONSORED AN INTERNATIONAL RESEARCH WORKSHOP AT THE UNIVERSITY OF GOTTINGEN, GOTTINGEN, GERMANY ATTENDED BY OVER 100 RESEARCHERS AND MEMBERS OF PHARMA AND PATIENT ADVOCACY GROUPS. SPONSORED A FOLLOW UP WORKSHOP FOR INTERNATIONAL RESEARCHERS IN SAN DIEGO, CA FOR OVER 30 RESEARCHERS. 16158 148536 true true false false false false false false false false false false false false false false false 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 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 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 KAREN GAYLORD DIRECTOR 002.00 X 0 0 0 MARTIN DUNLEAVY DIRECTOR 003.00 X 0 0 0 false false false 83431 187330 458 270761 553 553 83431 7755 -7755 -7755 UNREIMBURSED OFFICER EXPENSES 900099 8474 8474 8474 272033 8474 -7202 X 60000 60000 0 5000 5000 0 0 0 0 0 0 0 0 2524 1741 783 12565 10553 2012 0 0 51144 38205 8626 4313 0 8424 5793 842 1789 7150 5864 762 524 0 0 5635 5635 0 20253 20190 63 0 0 0 2527 1642 632 253 BANK AND CREDIT CARD FEES 4849 2938 781 1130 PROGRAM EXHIBIT MATERIALS , SUPPLIES 2969 2969 REGISTRATION FEES 1637 300 10 1327 0 184677 148536 24010 12131 214204 305454 276437 276974 1000 1168 1358 492809 583786 2627 6248 2627 6248 X 490182 577538 490182 577538 492809 583786 87356 X true X false true false X 197405 216610 206350 223593 270761 1114719 197405 216610 206350 223593 270761 1114719 36455 1078264 313 327 286 295 553 1774 1116493 135813 0.96580 0.94760 X 0.00000 0.00000 Part II Section A Line 1 YEAR 2013 UNUSUAL GRANT RECEIVED IN THE AMOUNT OF 158,759,YEAR 2015 AN UNUSUAL GRANT WAS RECEIVED IN THE AMOUNT OF 200,000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true Europe Including Iceland and Greenland SYMPOSIUM ON ALPORT SYNDROME RESEARCH SYMPOSIUM 14604 14604 14604 Europe Including Iceland and Greenland RESEARCH SYMPOSIUM 5000 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. ARIZONA 5K RACE 48814 48814 3657 635 200 2672 SOUTH DAKOTA 5K 4943 4943 1 29674 29674 591 83431 83431 3657 635 200 3263 7755 -7755 true ALPORT SYNDROME TREATMENT AND OUTCOMES REGISTRY 200 OAK STREET SE SUITE 500 MINNEAPOLIS MN 554552010 416042488 501 C 3 50000 PATIENT REGISTRY WASHINGTON UNIVERSITY DR JEFFREY MINER RENAL DIVISION 660 S EUCLID AVENUE ST LOUIS MO 63110 430653611 501 C 3 10000 RESEARCH FUNDING 2 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 16,158, Grants and allocations 0, Revenue 0 ATTENDED AND EXHIBITED AT THE AMERICAN SOCIETY OF NEPHROLOGY KIDNEY WEEK, SAN DIEGO, CA TO RAISE AWARENESS IN THE NEPHROLOGY COMMUNITY AND MEET WITH INTERNATIONAL RESEARCHERS AND MEDICAL ADVISORS.PARTICIPATED IN ADVOCACY EVENTS AND SUMMITS WITH THE NATIONAL KIDNEY FOUNDATION, NATIONAL ORGANIZATION OF RARE DISORDERS AND THE AMERICAN SOCIETY OF NEPHROLOGY. 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.