2014-04-07T06:02:18-00:00 2013-12-31 SECHLER CPA PC 921 E ORANGE DRIVE PHOENIX AZ 85014 990 2013-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 STANLEY SILVER TREASURER 2014-04-07 true CAROLYN SECHLER 6022302700 2014-04-07 X 2013 2015-11-30 17:44:51Z STAN SILVER 1608 E BRIARWOOD TERRACE PHOENIX AZ 85048 212073 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 216610 206350 54129 0 327 286 3576 173 274642 206809 77000 127250 0 0 0 12743 92002 91962 169002 219212 105640 -12403 365879 353476 0 365879 353476 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 123500 123500 AWARDED RESEARCH FUNDING TO DR. OLIVER GROSS OF THE UNIVERSITY MEDICAL CENTER GOTTINGEN, GERMANY FOR HIS ONE-YEAR STUDY THAT WILL EVALUATE ANTIMICRORNA-21 IN REDUCING RENAL SCARRING AND PROMOTING KIDNEY FUNCTION IN ALPORT PATIENTS AND DR. CLIFFORD KASHTAN, UNIVERSITY OF MINNESOTA A MEDICAL FOUNDATION FOR CONTINURED SUPPORT OF THE ALPORT SYNDROME TREATMENTS AND OUTCOMES REGISTRY. 27618 CONDUCTED AN INTERNATIONAL SYMPOSIUM ON ALPORT SYNDROME AT THE INTERNATIONAL PEDIATRIC NEPHROLOGY ASSOCIATION 2013 CONGRESS IN SHANGHAI, CHINA. OVER 200 PHYSICIANS AND RESEARCHERS ATTENDED THE SYMPOSIUM. IN ADDITION ASF PROVIDED INFORMATION ON ALPORT SYNDROME TO THE 1200 CONGRESS ATTENDEES. ALSO PROVIDED FINANCIAL SUPPORT FOR US BASED RESEARCHERS TO ATTEND THE INTERNATIONAL WORKSHOP ON ALPORT SYNDROME HELD AT OXFORD UNIVERSITY, UNITED KINGDOM. 26957 ATTENDED AND EXHIBITED AT THE AMERICAN SOCIETY OF NEPHROLOGY KIDNEY WEEK IN ATLANTA, GEORGIA IN NOVEMBER 2013 INCREASING AWARENESS AND DISTRIBUTING EDUCATIONAL INFORMATION TO THE OVER 12,000 MEDICAL AND RESEARCH COMMUNITY ATTENDEES. MET WITH MEMBERS OF ASF MEDICAL ADVISORY COMMITTEE TO DISCUSS 2013 PERFORMANCE AND PLANS FOR 2014. HELD MEETINGS WITH BOTH NATIONAL AND INTERNATIONAL RESEARCH COMMUNITY TO DISCUSS TRENDS AND NEW POSSIBLE OPPORTUNITIES FOR RESEARCH. HELD A REGIONAL FAMILY MEETING FOR OVER 50 PARTICIPANTS WITH MEDICAL EXPERTS FROM THE US AND GERMANY. 13950 3750 192025 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 true false false false false false false false false false false false false false false false false false false false false false true 5 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 UT PA NY NJ NH KY IL FL AZ 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 MARGARET BLUE SECRETARY 002.00 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 010.00 X 0 0 0 false false false 40521 165829 206350 286 286 40521 5264 -5264 -5264 UNREIMBURSED OFFICER EXPENSES 900099 5437 5437 5437 206809 5437 -4978 X 123500 123500 3750 3750 0 0 0 0 0 0 0 0 0 0 2772 2772 0 1121 1121 22636 8318 8318 6000 749 749 6613 5691 764 158 6246 5618 628 0 0 10271 10271 0 12811 12811 0 0 0 2243 725 1518 BANK AND CREDIT CARD FEED 2620 1986 444 190 PROGRAM EXHIBIT MATERIALS , SUPPLIES 23095 19345 3750 REGISTRATION FEES 785 10 775 0 219212 192025 14444 12743 239120 226431 125856 126142 903 903 365879 353476 0 0 X 365879 353476 365879 353476 365879 353476 -12403 X true X false true false X 67467 87529 197405 216610 206350 775361 67467 87529 197405 216610 206350 775361 57641 717720 351 216 313 327 286 1493 776854 273974 0.92390 0.95000 X 0.00000 0.00000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true East Asia and the Pacific SYMPOSIUM ON ALPORT SYNDROME RESEARCH SYMPOSIUM 20565 20565 20565 Europe RESEARCH 98500 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. ARIZONA 5K RACE 40521 40521 750 500 452 3562 40521 40521 750 500 452 3562 5264 -5264 true UNIVERSITY OF MN MEDICAL FOUNDATION 200 OAK STREET SE SUITE 500 MINNEAPOLIS MN 554552010 416042488 501 C 3 25000 RESEARCH 1 EDUCATION RESEARCH 5 3750 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 III Line 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. Form 990, Part III, Line 4d Program Service Expenses 10,200, Grants and allocations 0, Revenue 0 CONTINUED TO INCREASE OUTREACH AND AWARENESS TO THE PATIENT COMMUNITY THROUGH UPGRADES TO THE FOUNDATION WEBSITE, EMAIL CAPACITIES, INCREASED MAILINGS AND FOUNDATION FORUM. INCREASED THE USE OF SOCIAL MEDIA WITH THE USE OF BOTH FACEBOOK AND TWITTER. HELD VARIOUS MEETINGS WITH LOCAL BUSINESS LEADERS. Form 990, Part III, Line 4d Program Service Expenses 3,750, Grants and allocations 3,750, Revenue 0 AWARDED FIVE 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 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 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, 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.