2022-07-10T07:33:05-00:00 2021-12-31 822851604 SECHLER MORGAN CPAS PLLC 2418 W BARROW DRIVE CHANDLER AZ 85224 990 2021-01-01 208237159 ALPORT SYNDROME FOUNDATION INC ALPO 6093047078 PO BOX 4130 SCOTTSDALE AZ 852614130 MARTIN DUNLEAVY TREASURER 6093047078 2022-07-05 true MARTIN DUNLEAVY XXX-XX-XXXX KRISTINA MORGAN CPA P01370742 6022302700 2022-07-05 2 AAL1 IAL1 2021 2022-09-23 18:48:47Z ANDREW KRONENBERG PO Box 4130 Scottsdale AZ 85261 993526 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 2 282 0 738310 993479 0 707 47 -465 0 738552 993526 167289 163500 0 73636 85258 0 28843 197325 229262 438250 478020 300302 515506 1307819 1762638 78603 17916 1229216 1744722 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 208256 5500 STRENGTHENED AND EXPANDED PATIENT RESOURCES 1 ADDED A THIRD STAFF MEMBER, A PATIENT ENGAGEMENT COORDINATOR, TO ADDRESS THE NEEDS OF OUR GROWING PATIENT COMMUNITY. 2 ESTABLISHED AN EMERGING LEADERSHIP COUNCIL OF VOLUNTEERS TO ADDRESS THE UNMET NEEDS OF PATIENTS AGES 25-35. THE COUNCILS FIRST PROJECT WAS THE CREATION OF A DIGITAL, DOWNLOADABLE PATIENT GUIDE, WHICH IS NOW AVAILABLE IN ENGLISH AND SPANISH. 3 COMPLETED AN 18-MONTH-LONG PROJECT DOCUMENTING THE INSIGHTS AND EXPERIENCES OF 25 PEDIATRIC ALPORT PATIENTS, CULMINATING IN THE PEDIATRIC ALPORT INSIGHT REPORT. THE REPORT IS DESIGNED TO SUPPORT CLINICIANS AND FAMILIES AND ADDRESS BOTH THE PHYSICAL AND PSYCHOSOCIAL CHALLENGES OF GROWING UP WITH ALPORT SYNDROME. 4 CREATED AND DISTRIBUTED, ANNIE HAS ALPORT SYNDROME, AN EDUCATIONAL CHILDRENS COLORING BOOK TO HELP FAMILIES TALK ABOUT THIS RARE DISEASE WITH THEIR CHILDREN. 5 IMPLEMENTED A NEW WAY TO CONNECT PATIENTS THROUGH ALPORT DIRECT CONNECT VIRTUAL MEETINGS FOR SUBGROUPS OF PATIENTS AGES 18-35, 35-50, 50, AS WELL AS POST-TRANSPLANT-FOCUSED MEETINGS. 194500 158000 ADVANCED CRITICAL RESEARCH PROVIDED TWO VALUABLE RESEARCH GRANTS 1 PROOF-OF-CONCEPT GENE THERAPY DR. JEFF MINER, WASHINGTON UNIVERSITY IN ST. LOUIS AND HEARING LOSS DR. FELIPE SANTOS, MASSACHUSETTS EYE AND EAR INSTITUTE. 2 ESTABLISHED A SCIENTIFIC ADVISORY RESEARCH NETWORK COMPRISED OF 8 INTERNATIONAL EXPERTS IN ALPORT SYDROME WORKING COLLABORATIVELY TO STRATEGICALLY GUIDE ASF ON ACHIEVING ITS RESEARCH INVESTMENT OBJECTIVES. 3 PARTNERED WITH THE NATIONAL KIDNEY FOUNDATION TO DEVELOP THE NKF PATIENT NETWORK-ALPORT SYNDROME, A NEW REGISTRY FOCUSED ON CAPTURING CRITICAL NATURAL HISTORY DATA ON ALPORT PATIENTS, INCLUDING UNDERSTUDIED ASPECTS OF OUR RARE DISEASE TO LAUNCH EARLY 2022. 4 IMPLEMENTED A YEAR-LONG DIAGNOSIS STORIES PATIENT SURVEY TO BETTER UNDERSTAND THE PREVALENCE OF MISDIAGNOSIS AND TO COLLECT DATA POINTS FOR GAINING AN ACCURATE DIAGNOSIS, WITH 350 RESPONSES AS OF DECEMBER 2021. THE FIRST-ROUND REPORT WAS RELEASED MID-YEAR, ALONG WITH A VIDEO COMPANION PIECE FOCUSED ON THE EXPERIENCES OF FEMALE PATIENTS. 402756 true true false false false false false false false true false false false false false true true false false false false false false false false false false true true false false false false false false false false true false false false false false false false false false true 6 0 true 2 true false false false false false false false false false false false false false X 7 7 false true false false false false false true true false false true true true true true true true false false CA FL IL KY MA MD NC NJ NY PA UT VA X PREMIUM ORGANIZATION 6028402900 8001 E VIA MARINA SCOTTSDALE AZ 85258 X ANDREW KRONENBERG CHAIR 006.00 X X 0 0 0 RYAN LINDER SECRETARY 002.00 X X 0 0 0 MARTIN DUNLEAVY TREASURER 005.00 X X 0 0 0 SHARON LAGAS CO-FOUNDER PAST CHAIR 004.00 X X 0 0 0 ANDRE WEINSTOCK DIRECTOR 008.00 X 0 0 0 JANINE REED DIRECTOR 006.00 X 0 0 0 PHILLIP KUMNICK DIRECTOR 002.00 X 0 0 0 LISA BONEBRAKE EXECUTIVE DIRECTOR 040.00 X 0 0 0 false false false 5826 987653 993479 47 47 993526 47 158000 158000 5500 5500 0 0 0 0 78939 62046 9275 7618 0 60 47 7 6 6259 4920 735 604 90343 58723 27103 4517 0 22100 18550 1273 2277 0 0 19729 19259 258 212 7099 7099 21523 10548 5955 5020 32785 32339 245 201 0 0 0 0 22327 22327 0 0 9096 7149 1069 878 4260 3348 501 411 0 478020 402756 46421 28843 1021874 1444390 243543 243568 18324 21146 1530 2967 3490 21111 48514 1307819 1762638 16103 17916 62500 78603 17916 X 1100012 1443264 129204 301458 1229216 1744722 1307819 1762638 515506 X false true X true false X 558922 703620 548370 738310 993479 3542701 558922 703620 548370 738310 993479 3542701 1624357 1918344 950 1874 2508 707 47 6086 3598 3598 3552385 3488 0.54000 0.52860 X Part II Section A Line 1 TWO UNUSUAL GRANTS HAVE BEEN EXCLUDED FROM THE CALCULATION - 100,000 HAS BEEN EXCLUDED FROM BOTH THE 2017 COLUMN A AND THE 2018 COLUMN B. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 129204 421146 230568 18324 301458 20123 307458 178254 20123 129204 183161 220123 275000 108161 20123 120000 183161 120000 183161 20000 120000 20000 120000 1.00000 false false Financial derivatives and other financial products Closely-held equity interests Federal income taxes X 995026 1500 1500 993526 993526 479520 1500 1500 478020 478020 V 4 THE ORGANIZATIONS DONOR RESTRICTED NET ASSETS WERE RESTRICTED FOR THE FOLLOWING TIME RESTRICTIONS ON CONTRIBUTIONS RECEIVABLE AND RESEARCH GRANTS. X 2 MANAGEMENT BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR ANY INCOME TAX POSITIONS TAKEN, AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE FOUNDATION WOULD RECOGNIZE FUTURE ACCRUED INTEREST AND PENALTIES RELATED TO UNRECOGNIZED TAX BENEFITS AND LIABILITIES IN INCOME TAX EXPENSE IF SUCH INTEREST AND PENALTIES ARE INCURRED. X 4 b OTHER ROUNDING 1. true Washington University in St Louis One Brookings Dr St Louis MO 631304899 430653611 501c3 132000 Research genetic therapy A.S. Massachusetts Eye & Ear Institute 243 Charles Street Boston MA 02114 474262843 501c3 26000 Research cause of hearing loss A.S. 2 Paul Silver Award 3 5500 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 THE PAUL SILVER ENRICHMENT AWARD PROGRAM WAS ESTABLISHED IN THE MEMORY OF AN ALPORT SYNDROME PATIENT. RECIPIENTS ARE SELECTED BY A COMMITTEE COMPRISED OF 1 BOARD MEMBER, 1 SILVER FAMILY MEMBER, AND 2 FRIENDS OF THE SILVER FAMILY. RECIPIENTS ARE SELECTED BASED ON ESSAYS AND WRITTEN APPLICATIONS. RECIPIENTS PROVIDE WRITTEN REPORTS AND A VIDEO OF HOW FUNDS WERE SPENT. FAMILY OF BOARD MEMBERS AND STAFF ARE NOT ELIGIBLE TO APPLY. Part III Line 1 COLUMN B THE NUMBER OF RECIPIENTS REFLECTS THE NUMBER OF INDIVIDUALS ASSISTED WITH SCHOLARSHIPS DURING THE YEAR. LBONEBRAKE LLC OFFICER OWNED 90343 MANAGEMENT/COMMUNICATION SERVICES false Part IV Line 1 THE ORGANIZATION HAS AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC, FOR LISA BONEBRAKE TO PROVIDE EXECUTIVE DIRECTOR SERVICES TO THE ORGANIZATION. LISA IS THE SOLE OWNER OF LBONEBRAKE LLC. Form 990, Part VI, Section B, Line 3 THE ORGANIZATION HAS AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC, FOR LISA BONEBRAKE TO PROVIDE EXECUTIVE DIRECTOR SERVICES TO THE ORGANIZATION. LBONEBRAKE LLC WAS PAID 90,343 FOR THE SERVICES PROVIDED DURING 2021. 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. Form 990, Part VI, Section B, Line 12 C 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, FINANCIAL STATEMENTS AND GOVERNING DOCUMENTS INCLUDING ITS CONFLICT OF INTEREST POLICIES WHEN REQUESTED IN WRITING OR IN PERSON.