2018-09-11T07:15:36-00:00 2017-12-31 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2017-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 4808003510 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTY DUNLEAVY TREASURER 2018-09-11 true KRISTINA MORGAN CPA 6022302700 2018-09-11 70.162.157.61 2018-09-11 14:43:10 MS P 62E43348EE3C7DAB2011D4FB068CA8D1BCB2AB31 62E43348EE3C7DAB2011D4FB068CA8D1BCB2AB31 2017 2018-06-14 16:35:46Z Sharon Lagas 1608 E Briarwood Terrace Phoenix AZ 85048 671363 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. 8 8 1 60 0 574905 658922 0 505 950 -4633 4429 570777 664301 176200 102000 0 100902 120140 0 17219 238154 205514 515256 427654 55521 236647 772448 930216 89389 10510 683059 919706 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 50000 50000 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. 50000 50000 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 113260 2000 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. IT IS ESTIMATED THERE ARE 30,000 - 60,000 ALPORT SYNDROME PATIENTS IN THE USA, BUT THE DISEASE IS OFTEN MISDIAGNOSED OR UNDIAGNOSED UNTIL KIDNEY FAILURE IS IMMINENT. PATIENTS THEN NEED INFORMATION AND SUPPORT SWIFTLY. 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. 159027 831 372287 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 11 0 true 1 true false false false false false false false false false false X 8 8 true false false false false false false true true false false true true true true true true true false false CA CT FL IL KY MA MD MO NC NJ NY PA UT VA X PREMIUM ORGANIZATION 6028402900 PO BOX 4130 SCOTTSDALE AZ 85261 SHARON LAGAS PRESIDENT 040.00 X X 0 0 0 VINT DEGRAW VICE PRESIDENT 005.00 X X 0 0 0 STANLEY SILVER TREASURER 030.00 X X 0 0 0 MICHAEL PANELLA DIRECTOR 010.00 X 0 0 0 MARTIN DUNLEAVY DIRECTOR 005.00 X 0 0 0 ANDREW KRONENBERG DIRECTOR 3/2017 -12/2017 005.00 X 0 0 0 ANDRE WEINSTOCK DIRECTOR 6/2017 -12/2017 003.00 X 0 0 0 LISA BONEBRAKE DIRECTOR 9/2017 -12/2017 003.00 X 0 0 0 GINA PARZIALE EXECUTIVE DIRECTOR 050.00 X 106911 0 650 106911 650 1 false false false 49390 609532 300 658922 950 950 10660 49090 7062 3598 3598 UNREIMBURSED OFFICER EXPENSES 900099 831 831 831 664301 831 4548 50000 50000 2000 2000 50000 50000 0 111961 89569 11196 11196 0 0 0 0 8179 6543 818 818 0 82 66 8 8 24586 12789 10198 1599 0 0 55855 54717 1138 0 11017 9356 1661 17548 14038 1755 1755 0 655 655 0 0 92482 92208 137 137 0 0 0 3289 357 2887 45 0 427654 372287 38148 17219 250661 267567 500429 551379 20000 110000 1358 1270 772448 930216 14389 10510 75000 89389 10510 X 663059 799706 20000 120000 683059 919706 772448 930216 X 236647 X false true X true false X 206350 223593 270761 574905 658922 1934531 206350 223593 270761 574905 658922 1934531 544735 1389796 286 295 553 505 950 2589 3598 3598 1940718 29671 0.71610 0.91670 X 0.00000 0.00000 Part II Section A Line 1 An unusal grant in the amount of 158,759 has been excluded from 2014 Column b, Line 1 . Additionally, a 200,000 contribution received in 2016 was initially in the year 2016 determined to be unusal and excluded from 2016 Column e on the 2016 Schedule A filed. Subsequently, the 200,000 contribution has been added back to 2016 Column d on the 2017 Schedule A because the unusal determination no longer applies. Part II Section B Line 9 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. 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. false 20000 120000 20000 120000 20000 20000 1.00000 false false Financial derivatives and other financial products Closely-held equity interests Federal income taxes 666648 1375 972 2347 664301 664301 430001 1375 972 2347 427654 427654 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. XI 2 d OTHER ADJUSTMENT EXPENSE REIMBURSEMENT NETTED WITH EXPENSES FOR TAX RETURN REPORTING 972. XII 2 d OTHER ADJUSTMENT EXPENSE REIMBURSEMENT NETTED WITH EXPENSES FOR TAX RETURN REPORTING 972. true Europe Including Iceland and Greenland RESEARCH ON ALPORT SYNDROME RESEARCH ON ALPORT SYNDROME 77177 77177 77177 Europe Including Iceland and Greenland RESEARCH FUNDING 50000 WIRE TRANSF 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 49777 40905 8872 835 500 125 4952 OHIO 5K RACE 9515 7809 1706 650 59292 48714 10578 835 500 125 5602 7062 3516 true Alport Syndrome Treatment & Outcomes Registry 200 Oak Street Ste 500 Minneapolis MN 554552010 416042488 501 c 3 50000 ASTOR 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 8,362, Grants and allocations 0, Revenue 831 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 27,177, 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 123,488, 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 OTHER CONTRACT SERVICES 55,855, PATIENT SUPPORT EDUCATION CONSULANTS 54,717, PROGRAM 54,717, ADMIN -0-, FUNDRAISING -0- PAYROLL PROCESSING FEES 1,138, PROGRAM -0-, ADMIN 1,138, FUNDRAISING -0-.