2025-09-03T09:22:23-05:00 2024-12-31 390758449 WIPFLI LLP 2501 W BELTLINE HWY STE 501 MADISON WI 53713 990 2024-01-01 362916466 LES TURNER AMYOTROPHIC LATERAL SCLEROSIS FOUNDATION LTD LEST 8476793311 5550 WEST TOUHY AVE 302 SKOKIE IL 600773254 LAURA FREVELETTI CEO 8476793311 2025-07-02 1 1 QUINN DUGAN P02267768 6082741980 2025-07-02 2024 2025-03-06 01:10:19Z LAURA FREVELETTI 5550 WEST TOUHY AVE 302 SKOKIE IL 600773254 5474152 0 X WWW.LESTURNERALS.ORG X 1977 IL TO FIND A CURE FOR ALS, PROVIDE PATIENT AND FAMILY SUPPORT AND INCREASE PUBLIC AWARENESS. 19 19 19 35 0 0 3233758 5107087 0 0 102365 107409 -653715 -689712 2682408 4524784 1217914 1126959 0 0 1474136 1457602 0 0 421419 663890 748720 3355940 3333281 -673532 1191503 3286760 4414309 1795025 1731071 1491735 2683238 TO PROVIDE THE MOST COMPREHENSIVE CARE AND SUPPORT TO PEOPLE LIVING WITH ALS AND THEIR FAMILIES IN CHICAGOLAND, SO THEY CAN CONFIDENTLY NAVIGATE THE DISEASE, AND ADVANCE SCIENTIFIC RESEARCH FOR THE PREVENTION, TREATMENT AND CURE OF ALS. 0 0 2651091 1126959 0 THE FOUNDATION CURRENTLY MAKES GRANTS TO THE LES TURNER ALS CENTER AT NORTHWESTERN MEDICINE FOR ALS RESEARCH, THE LOIS INSOLIA ALS CLINIC AND OTHER ALS EDUCATIONAL AND SCIENTIFIC ACTIVITIES.IN ADDITION, THE FOUNDATION PROVIDES PERSONALIZED SUPPORT VISITS, SUPPORT GROUPS, ACCESS TO EQUIPMENT AND OTHER PROGRAM SERVICES TO PEOPLE WITH ALS AND THEIR FAMILIES. THE FOUNDATION OFFERS EXTENSIVE EDUCATIONAL RESOURCES TO PEOPLE WITH ALS AND THEIR FAMILIES ACROSS THE COUNTRY AND INCREASES PUBLIC AWARENESS OF THE DISEASE THROUGH EDUCATIONAL PROGRAMS AND INITIATIVES. 2651091 1 1 0 0 0 0 0 0 0 1 1 0 0 1 0 1 1 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 19 0 1 19 1 0 0 0 0 1 1 1 1 0 0 0 0 0 0 X 19 19 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 IL X X DEBORAH CROCKETT 7734847188 5550 WEST TOUHY AVE 302 SKOKIE IL 600773254 ERIN REARDON COHN BOARD CHAIR 2.00 X X 0 0 0 HARVEY GAFFEN CHAIR EMERITUS 2.00 X X 0 0 0 THOMAS F BOLEKY VICE CHAIR 2.00 X X 0 0 0 JOEL A SCHECHTER VICE CHAIR 2.00 X X 0 0 0 JOHN COLEMAN III MD VICE CHAIR 2.00 X X 0 0 0 ROBIN FERN VICE CHAIR 2.00 X X 0 0 0 DEBORAH CROCKETT TREASURER 2.00 X X 0 0 0 TINA CASCIO DIRECTOR 2.00 X 0 0 0 AALOK DAVE DIRECTOR 2.00 X 0 0 0 SEAN FALLON DIRECTOR 2.00 X 0 0 0 BONNY GAFFEN DIRECTOR 2.00 X 0 0 0 FRANK GRANATA DIRECTOR 2.00 X 0 0 0 JODI M HARRIS DIRECTOR 2.00 X 0 0 0 KEN HOFFMAN DIRECTOR 2.00 X 0 0 0 JANENE JONAS DIRECTOR 2.00 X 0 0 0 JOSHUA NEWSOME DIRECTOR 2.00 X 0 0 0 MARY LOU PISONE DIRECTOR 2.00 X 0 0 0 DIANA PISONE DIRECTOR 2.00 X 0 0 0 SARVESH SOI DIRECTOR 2.00 X 0 0 0 LAURA FREVELETTI CHIEF EXECUTIVE OFFICER 40.00 X 191209 0 47868 MARK HEIDEN DIRECTOR OF COMMUNICATIONS 40.00 X 127500 0 4972 LAUREN WEBB CHIEF ADVOCACY AND OUTREACH OFFICER 40.00 X 120634 0 27548 CONSTANCE PAESEL CHIEF OPERATIONS OFFICER 40.00 X 113500 0 4483 552843 0 84871 4 0 1 0 0 1563182 120024 3423881 5107087 106190 106190 1219 0 1219 1219 1219 259656 1563182 949368 -689712 -689712 4524784 0 0 -582303 1126959 1126959 239077 175189 21447 42441 1058920 775944 94993 187983 32401 23742 2907 5752 30030 22005 2694 5331 97174 71206 8717 17251 23038 23038 165064 29404 56122 79538 38364 33664 4700 85292 57817 7357 20118 37740 33758 75 3907 67645 36542 11297 19806 25379 24751 29 599 29596 20623 8525 448 50863 40856 10007 19521 13018 3507 2996 ASSISTANCE PROGRAMS 136891 136891 REPAIRS AND MAINTENANCE 59335 25300 8626 25409 AWARDS AND GIFTS 7215 2623 1145 3447 DUES AND SUBSCRIPTIONS 2777 799 285 1693 3333281 2651091 260771 421419 2058972 3272662 162726 66359 97333 95710 95433 116126 274081 255917 630427 18164 124165 147143 110450 165540 7254 532605 3286760 4414309 63007 73843 1095000 1100000 637018 557228 1795025 1731071 X 1167421 1797147 324314 886091 1491735 2683238 3286760 4414309 1191503 0 X X 0 1 X 1 0 X 4170997 3680871 3051751 3233758 5107087 19244464 4170997 3680871 3051751 3233758 5107087 19244464 1589672 17654792 31685 7644 29199 102365 106190 277083 31397 31397 19552944 0.90290 0.91660 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 124165 17500 5478 147143 115000 9165 124165 115000 115000 0.09898 0.90102 0.00000 0 0 55777 52054 3723 218304 203863 14441 18164 DEPOSITS 7254 RIGHT OF USE ASSETS - OPERATING 525351 532605 X 4524784 0 4524784 0 4524784 3333281 0 3333281 0 3333281 PART V, LINE 4: THE FOUNDATION'S ENDOWMENT CONSISTS OF TWO FUNDS WITH DONOR RESTRICTIONS, THE JOSEPH B. HELLER ENDOWMENT FUND, CREATED IN 2022 AND THE GIBBLE ENDOWMENT FUND, CREATED IN 2024. THE ENDOWMENT'S PRIMARY OBJECTIVE IS TO MAINTAIN AND GROW ITS PRINCIPAL IN PERPETUITY. THE PRIMARY LONG-TERM FINANCIAL OBJECTIVE FOR THE FOUNDATION'S ENDOWMENTS IS TO PRESERVE THE REAL PURCHASING POWER OF ENDOWMENT ASSETS AND INCOME AFTER ACCOUNTING FOR ENDOWMENT SPENDING AND COSTS OF PORTFOLIO MANAGEMENT. PART X, LINE 2: THE FOUNDATION IS A TAX-EXEMPT CORPORATION AS PERMITTED BY SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. THE FOUNDATION BELIEVES IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN, AND AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. GALA 715481 616481 99000 96553 2767 8950 84837 WALK FOR LIFE 664081 664081 52899 2015 4120 87982 4 443276 282620 160656 44463 59161 0 505621 1822838 1563182 259656 193915 63943 13070 678440 949368 -689712 1 NORTHWESTERN UNIVERSITY FEINBERG SCHOOL OF MEDICINE OFFICE OF SPONSORED RESEARCH-750 N LAKE SHORE DRIVE CHICAGO IL 60611 362167817 501(C)(3) 700000 0 RESEARCH TO FIND A CURE NORTHWESTERN UNIVERSITY FEINBERG SCHOOL OF MEDICINE OFFICE OF SPONSORED RESEARCH-750 N LAKE SHORE DRIVE CHICAGO IL 60611 362167817 501(C)(3) 26959 0 EDUCATION NORTHWESTERN UNIVERSITY FEINBERG SCHOOL OF MEDICINE OFFICE OF SPONSORED RESEARCH-750 N LAKE SHORE DRIVE CHICAGO IL 60611 362167817 501(C)(3) 100000 0 ENDOWMENT FOR ALS RESEARCH AND PATIENT CENTER LOIS INSOLIA ALS CLINIC 675 N ST CLAIR STE 20-100 CHICAGO IL 60611 363097297 501(C)(3) 300000 0 CLINIC FOR THE THERAPY OF ALS PATIENTS 4 0 PART I, LINE 2: THE LES TURNER ALS FOUNDATION CLOSELY OVERSEES THE UTILIZATION OF GRANT FUNDS, AS OUTLINED IN THE OFFICIAL AGREEMENT BETWEEN THE FOUNDATION AND NORTHWESTERN UNIVERSITY FEINBERG SCHOOL OF MEDICINE (NORTHWESTERN). THIS AGREEMENT WAS ESTABLISHED WITH THE PURPOSE OF ESTABLISHING THE LES TURNER ALS RESEARCH AND PATIENT CENTER (THE CENTER). ACCORDING TO THE TERMS OUTLINED IN THE AGREEMENT, AN ADVISORY COUNCIL, CONSISTING OF THE FOUNDATION'S CEO, MEMBERS OF THE EXECUTIVE COMMITTEE OF THE BOARD, AND LEADERSHIP FROM NORTHWESTERN, CONVENES AT LEAST TWICE A YEAR. THE PRIMARY OBJECTIVE OF THESE MEETINGS IS TO PROVIDE GUIDANCE, FEEDBACK, AND COUNSEL TO THE LES TURNER ALS CENTER DIRECTOR, WITH A FOCUS ON ADVANCING THE CENTER'S MISSION. FURTHERMORE, THE AGREEMENT STIPULATES THAT NORTHWESTERN UNIVERSITY IS OBLIGATED TO SHARE INFORMATION AND UPDATES ON THE ACTIVITIES OF THE CENTER WITH THE FOUNDATION. ADDITIONALLY, THE FOUNDATION REQUESTS REGULAR REPORTS FROM ANY FACULTY MEMBER ASSOCIATED WITH THE LES TURNER ALS CENTER. THESE REPORTS INCLUDE ANNUAL UPDATES ON SCIENTIFIC AND CLINICAL ALS RESEARCH, QUARTERLY CLINIC OPERATIONS REPORTS, AS WELL AS NOTIFICATION OF ANY PUBLISHED ALS RESEARCH OR ALS-RELATED CONFERENCE PRESENTATIONS, ACCOMPANIED BY ABSTRACTS. BY IMPLEMENTING THESE PROVISIONS, THE FOUNDATION ENSURES DILIGENT MONITORING OF GRANT FUND USAGE AND MAINTAINS A COMPREHENSIVE UNDERSTANDING OF THE ONGOING WORK AND ADVANCEMENTS WITHIN THE LES TURNER ALS CENTER. X X 0 0 0 0 0 0 0 0 0 LAURA FREVELETTI CHIEF EXECUTIVE OFFICER 191209 0 0 0 0 0 6480 0 41388 0 239077 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 BONNY AND HARVEY GAFFEN HAVE A FAMILY RELATIONSHIP. MARY LOU AND DIANA PISONE HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B A COPY OF THE 990 IS PROVIDED TO EACH BOARD MEMBER PRIOR TO FILING AND APPROVED BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY, EACH STAFF AND BOARD MEMBER IS REQUIRED TO STATE ALL AFFILIATIONS WHICH COULD GIVE RISE TO A POTENTIAL CONFLICT. EMPLOYMENT CHANGES ARE MONITORED AS WELL. ALL POTENTIAL CONFLICTS ARE REVIEWED ANNUALLY BY THE GOVERNANCE COMMITTEE OF THE BOARD OF DIRECTORS. ANY POTENTIAL CONFLICTS ARE MITIGATED BY FULL TRANPARENCY TO THE BOARD AND BY THE BOARD MEMBER INVOLVED RECUSING THEMSELVES FROM A VOTE. FORM 990, PART VI, SECTION B, LINE 15 CEO COMPENSATION IS DETERMINED BY THE EXECUTIVE COMMITTEE USING COMPARABILITY DATA AND IS APPROVED BY THE FULL BOARD OF DIRECTORS. KEY OFFICER COMPENSATION IS DETERMINED BY CEO AND COO. ALL INCREASES ARE APPROVED BY EXECUTIVE COMMITTEE AND BOARD OF DIRECTORS FORM 990, PART VI, SECTION C, LINE 19 ALL DOCUMENTS ARE AVAILABLE UPON REQUEST. FINANCIAL STATEMENTS ARE INCLUDED ON THE WEBSITE. FORM 990, PART XII, LINE 2C THERE WERE NO CHANGES TO THE AUDIT SELECTION PROCESS FROM THE PRIOR YEAR.