2013-04-15T05:22:46-00:00 2012-12-31 SECHLER CPA PC 921 E ORANGE DRIVE PHOENIX AZ 85014 990 2012-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4804600621 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 STANLEY SILVER 2013-04-15 true CAROLYN SECHLER 6022302700 2013-04-15 2012 2016-03-07 17:11:31Z STAN SILVER 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 282582 false X WWW.ALPORTSYNDROME.ORG X 2007 AZ 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. 7 7 0 53 0 150049 216610 54129 313 327 40659 3576 191021 274642 103800 77000 0 0 0 4247 28347 92002 132147 169002 58874 105640 261856 365879 715 0 261141 365879 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 75000 75000 AWARDED RESEARCH FUNDING TO DR. JEFFREY MINER, PROFESSOR OF MEDICINE, WASHINGTON UNIVERSITY, ST. LOUIS, MO FOR HIS STUDY DEFINING EFFICACY OF COMBINATION DRUG THERAPY IN ALPORT MICE AND DR. CLIFFORD KASHTAN, UNIVERSITY OF MINNESOTA MEDICAL FOUNDATION FOR CONTINURED SUPPORT OF THE ALPORT SYNDROME TREATMENTS AND OUTCOMES REGISTRY. 53293 CONDUCTED A 2 DAY ALPORT SYNDROME FAMILY CONFERENCE AT THE UNIVERISTY OF MINNESOTA FOR PATIENTS AND FAMILIES ATTENDED BY OVER 200 PARTICIPANTS. DEVELOPED SEPARATE SPECIFIC PROGRAMS FOR TEENS, YOUNG ADULTS AND PARENTS. ALL CONFERENCE MATERIALS ARE AVAILABLE ON THE WEBSITE. 9912 ATTENDED AND EXHIBITED AT THE AMERICAN SOCIETY OF NEPHROLOGY KIDNEY WEEK IN SAN DIEGO, CA IN NOVEMBER, 2012 INCREASING AWARENESS AND DISTRIBUTING EDUCATIONAL INFORMATION TO THE MEDICAL AND RESEARCH COMMUNITY. THIS MEETING IS ATTENDED BY OVER 12,000 PROFESSIONALS IN THE NEPHROLOGY COMMUNITY. MET WITH MEMBERS OF THE FOUNDATION MEDICAL ADVISORY COMMITTEE TO DISCUSS 2012 PERFOMANCE AND PLANS FOR 2013. MEETINGS WITH MEMBERS OF BOTH THE NATIONAL AND INTERNATIONAL RESEARCH COMMUNITY TO DISCUSS TRENDS AND NEW POSSIBLE OPPORTUNITES FOR ALPORT SYNDROME RESEARCH. IN ADDITION, HELD A REGIONAL FAMILY MEETING FOR OVER 75 PARTICIPANTS WITH MEDICAL EXPERTS FROM THE US, AUSTRALIA, AND GERMANY. 18460 2000 156665 true true false false false false false false false false false false false false false false false false false false false false 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 11 0 true 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 true true false AZ X STANLEY SILVER 4804600621 30042 N 77TH PLACE SCOTTSDALE AZ 85266 X SHARON LAGAS 025.00 X X 0 0 0 VINT DEGRAW 005.00 X X 0 0 0 MARGARET BLUE 003.00 X X 0 0 0 STANLEY SILVER 030.00 X X 0 0 0 JEFFERY ROSS 010.00 X 0 0 0 MICHAEL PANELLA 010.00 X 0 0 0 CYNTHIA ARNOLD 003.00 X 0 0 0 false false false 43233 173377 216610 CONFERENCE AND EVENTS 900099 51129 51129 TRIBUTE AWARD 900099 3000 3000 54129 327 327 11472 43233 7940 3532 REFUND 900099 44 44 44 274642 54173 327 75000 75000 2000 2000 0 0 0 0 0 0 0 0 0 0 4420 2820 1600 0 0 5315 5315 465 465 12042 6695 4513 834 3062 3062 0 0 2136 222 1471 443 0 59890 59890 0 0 0 193 89 104 BANK AND CREDIT CARD FEED 2271 1572 347 352 REGISTRATION FEES 2208 55 2153 0 169002 156665 8090 4247 159825 239120 100528 125856 1503 903 261856 365879 715 715 0 X 261141 365879 261141 365879 261856 365879 105640 -902 X true X false true false X 68826 67467 221482 197405 216610 771790 68826 67467 221482 197405 216610 771790 27779 744011 351 216 313 327 1207 772997 0.96250 0.94220 X 0.00000 0.00000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 5 K 54705 43233 11472 7940 54705 43233 11472 7940 7940 3532 true WASHINGTON UNIVERSITY 700 ROSEDALE AVE BOX 1000 ST LOUIS MO 63112 430653611 501C3 50000 RESEARCH UNIVERSITY OF MN FND 200 OAK ST SE STE 200 MINNEAPOLIS MN 55455 416042488 501C3 25000 RESEARCH 2 EDUCATION 2 2000 II 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. III 1 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. I 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. I 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. Form 990 Part VI A 11b THE TREASURER OF THE ORGANIZATION DISTRIBUTES A PDF COPY OF THE 990 TO ALL BOARD MEMBERS FOR REVIEW AND COMMENT PRIOR TO THE RETURN BEING FILED. Form 990 Part VI A 12c 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 B 15 THE EXECUTIVE COMMITEE REVIEWS THE COMPENSATION FOR ALL OFFICERS AND 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 COMMITTEE THEN APPROVES ANY CHANGES IN COMPENSATION BASED ON THIS INFORMATION. Form 990 Part VI C 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 VI A 2 SHARON LAGAS, PRESIDENT IS DAUGHTER OF STANLEY SILVER, TREASURER.