2025-02-05T10:41:34-06:00 2024-06-30 390859910 BAKER TILLY ADVISORY GROUP LP 1 HIGHWOOD DRIVE TEWKSBURY MA 01876 990 2023-07-01 521375827 NATIONAL SCLERODERMA FOUNDATION INC NATI 8007224673 300 ROSEWOOD DRIVE 105 DANVERS MA 01923 MARY J WHEATLEY IOM CAE CHIEF EXECUTIVE OFFICER 8007224673 2025-01-31 1 1 MATTHEW KALIL CPA MBA P01517069 9785575300 2025-01-31 2023 2025-03-06 01:10:19Z MARY J WHEATLEY 300 ROSEWOOD DRIVE 105 DANVERS MA 01923 6367023 0 X WWW.SCLERODERMA.ORG X 1993 IL THE NATIONAL SCLERODERMA FOUNDATION'S MISSION IS TO ADVANCE MEDICAL RESEARCH, PROMOTE DISEASE AWARENESS, AND PROVIDE SUPPORT AND EDUCATION TO PEOPLE WITH SCLERODERMA, THEIR FAMILIES AND SUPPORT NETWORKS. 16 16 35 225 0 0 6057608 3912611 0 0 476604 970638 381686 58473 6915898 4941722 1812000 1453529 0 0 2783041 2844993 0 0 1016674 1866701 2658330 6461742 6956852 454156 -2015130 12897422 11162466 3086186 2809269 9811236 8353197 X THE NATIONAL SCLERODERMA FOUNDATION'S MISSION IS TO ADVANCE MEDICAL RESEARCH, PROMOTE DISEASE AWARENESS, AND PROVIDE SUPPORT AND EDUCATION TO PEOPLE WITH SCLERODERMA, THEIR FAMILIES AND SUPPORT NETWORKS. 0 0 1929049 1453529 A RELENTLESS FORCE IN FINDING A CURE AND IMPROVING THE LIVES OF PEOPLE AFFECTED BY SCLERODERMA, THE NATIONAL SCLERODERMA FOUNDATION ADVANCES MEDICAL RESEARCH, PROMOTES DISEASE AWARENESS, AND PROVIDES SUPPORT AND EDUCATION TO PEOPLE WITH SCLERODERMA, THEIR FAMILIES AND SUPPORT NETWORKS. SUPPORTED BY A NETWORK OF THOUSANDS OF INDIVIDUALS ACROSS THE UNITED STATES, THE FOUNDATION IS THE LEADING NONPROFIT FUNDER OF PEER-REVIEWED RESEARCH TO DISCOVER THE CAUSE, UNDERSTAND THE MECHANISMS, AND OVERCOME SCLERODERMA FOREVER. RESEARCH: IN FY 2024, THE FOUNDATION MADE A COMMITMENT OF $1.4 MILLION TO FUND RESEARCH. THIS FUNDING AIMS TO STIMULATE AND SUPPORT INVESTIGATIONS INTO BETTER UNDERSTANDING THE MECHANISMS THAT CAUSE THE DISEASE, HOW TO PREVENT AND ACCURATELY DIAGNOSIS AND TREAT THE DISEASE, AND ULTIMATELY FIND A CURE FOR SCLERODERMA. EACH AWARD IS $200,000 SPREAD OVERMULTIPLE YEARS. IN FY 2024, FOUR AWARDS WERE TWO-YEAR ESTABLISHED INVESTIGATOR AWARDS, AND THREE AWARDS WERE THREE-YEAR NEW INVESTIGATOR AWARDS. NEW INVESTIGATOR AWARDS ARE INTENDED TO HELP EMERGING SCIENTISTS GATHER SUFFICIENT DATA TO DEMONSTRATE THE VALUE OF THEIRAREA OF INVESTIGATION AND ATTRACT LARGER FUNDING FROM OTHER SOURCES. THE FOUNDATION'S PEER REVIEWED RESEARCH GRANTS PROGRAM PRIORITIZES SCIENTIFIC MERIT AND IS ADMINISTERED BY THE FOUNDATION'S RESEARCH COMMITTEE. THIS COMMITTEE, COMPOSED OF SCLERODERMA EXPERTS FROM ACROSS THE COUNTRY, MAKES FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS ANNUALLY AFTER A RIGOROUS PEER REVIEW PROCESS.THE PEER-REVIEW RESEARCH COMMITTEE IS COMPOSED OF HIGHLY RESPECTED SCIENTIFIC EXPERTS WHO REVIEW, CRITIQUE, AND RANK ALL APPLICATIONS BASED ON THE NATIONAL INSTITUTES OF HEALTH'S RANKING SYSTEM. ONLY PROJECTS OF SIGNIFICANT SCIENTIFIC MERIT ARE FUNDED. EACH GRANT APPLICATION CONTAINS VERY SPECIFIC ELIGIBILITY AND REVIEW CRITERIA. DETAILS REGARDING THESE REQUIREMENTS ARE AVAILABLE AT WWW.SCLERODERMA.ORG. ALL APPLICATIONS UNDERGO RIGOROUS PEER REVIEW AND ARE SCORED AND RANKED ACCORDING TO THE REVIEW CRITERIA AND OVERALL MERIT OF THE PROPOSAL. PEER REVIEW RANKINGS ARE SENT TO THE FOUNDATION'S RESEARCH COMMITTEE FOR QUALIFICATION BEFORE BEING PRESENTED TO THE FOUNDATION BOARD OF DIRECTORS FOR FINAL APPROVAL OF FUNDING. AFTER THE AWARDS ARE MADE, ALL RECIPIENTS ARE REQUIRED TO COMPLETE FUNDING CONTRACTS WITH INSTITUTIONAL SIGN-OFF AND MUST ALSO SUBMIT ANNUAL REPORTS ON THEIR PROGRESS. ALL REPORTS ARE REVIEWED BY THE FOUNDATION'S RESEARCH COMMITTEE TO ENSURE COMPLIANCE WITH PROGRAMMATIC, SCIENTIFIC, AND FISCAL AND ADMINISTRATIVE POLICES AND REQUIREMENTS. 2782391 EDUCATION: THE FOUNDATION PROVIDES EDUCATION ABOUT HOW TO LIVE BETTER WITH SCLERODERMA FOR THOSE AFFECTED BY THE DISEASE, AS WELL AS THEIR CAREGIVERS, FAMILIES AND SUPPORT NETWORKS. THE FOUNDATION IS ALSO A CME AND CNE PROVIDER, EDUCATING HEALTHCARE PROVIDERS ABOUT SIGNS AND SYMPTOMS, TIMELY DIAGNOSIS, AND CUTTING-EDGE TREATMENTS AND THERAPIES. THE NATIONAL SCLERODERMA CONFERENCEATTRACTS MORE THAN 500 PARTICIPANTS ANNUALLY.SUPPORT: THE FOUNDATION SERVES PEOPLE LIVING WITH SCLERODERMA, AS WELL AS THEIR CAREGIVERS AND FAMILY MEMBERS BY PROVIDING ACCESS TO SUPPORT GROUPS. 4711440 1 1 0 0 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 15 0 1 35 1 0 0 0 0 0 1 0 0 0 0 0 0 0 X 16 16 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI NV X X THE ORGANIZATION 8007224673 300 ROSEWOOD DRIVE 105 DANVERS MA 01923 COS MALLOZZI DIRECTOR 2.00 X 0 0 0 COURTNEY CALIENDO DIRECTOR 2.00 X 0 0 0 CHRISTINA LOCCKE DIRECTOR 2.00 X 0 0 0 MARY BLADES DIRECTOR 2.00 X 0 0 0 TRACY PORTER DIRECTOR 2.00 X 0 0 0 MARK OROZCO III MBA DIRECTOR 2.00 X 0 0 0 LINDA BORNSTEIN BAUM OD DIRECTOR 2.00 X 0 0 0 MARCIA WALKER DIRECTOR 2.00 X 0 0 0 ZEBA HYDER DIRECTOR 2.00 X 0 0 0 NANCY WALTERMIRE DIRECTOR 2.00 X 0 0 0 AJ NAHMAD DIRECTOR 2.00 X 0 0 0 JANE LADAS DIRECTOR 2.00 X 0 0 0 KEVIN BOYANOWSKI CHAIR (INTERIM TREAS JUL 23-APR 24) 2.00 X X 0 0 0 CAROL FEGHALI-BOSTWICK PH D VICE CHAIR 2.00 X X 0 0 0 J MICHAEL LEVENGOOD ESQ SECRETARY 2.00 X X 0 0 0 BLAKE EMBREE TREASURER (SINCE APR '24) 2.00 X X 0 0 0 MARY J WHEATLEY CEO 40.00 X 235945 0 17580 MICHAEL B HYDE VP OF FINANCE 40.00 X 158406 0 33748 ASHLEY M PRUETT VP OF COMMUNITY ENGAGEMENT 40.00 X 127832 0 21887 522183 0 73215 3 0 1 0 COMMUNITY COUNSELING SERVICE CO LLC PO BOX 824885 PHILADELPHIA PA 191824885 PROFESSIONAL SERVICES 106791 1 788371 3124240 3912611 240318 240318 1917035 1186715 730320 730320 730320 238586 788371 238586 0 RETURNED GRANT AWARDS 900099 58473 58473 58473 4941722 0 0 1029111 1241529 1241529 12000 12000 200000 200000 444242 152542 265400 26300 1882036 1358744 368142 155150 37616 28213 6231 3172 281398 206394 50648 24356 199701 131803 52122 15776 35274 35274 45500 45500 55852 55852 498753 364147 26916 107690 13754 8254 2750 2750 218727 52528 16696 149503 436946 262168 87389 87389 211870 118422 37471 55977 229770 166566 31602 31602 583727 238108 88706 256913 23920 14144 4888 4888 79170 47502 15834 15834 FEES AND LICENSES 202627 101444 33851 67332 OUTREACH 22440 6932 3466 12042 6956852 4711440 1228738 1016674 2257990 878390 270820 602650 348601 268330 300746 251826 31708 48920 9588217 9255822 400086 108354 12897422 11162466 315680 377001 2416673 2166680 134975 174024 218858 91564 3086186 2809269 X 7687928 6082611 2123308 2270586 9811236 8353197 12897422 11162466 X -2015130 557613 -522 X X 0 1 X 1 0 X 3405450 3721793 4462430 6057608 3912063 21559344 3405450 3721793 4462430 6057608 3912063 21559344 1584378 19974966 180407 167751 175431 203947 240318 967854 22527198 569005 0.88670 0.88480 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2123308 238530 91252 2270586 1655912 395455 159524 87583 2123308 1881204 -155307 69985 1655912 1658720 293349 70865 1881204 1627038 31682 101713 101713 1658720 1.00000 0 0 21166 21166 0 192552 148127 44425 87028 82533 4495 48920 OPERATING LEASE LIABILITIES 91564 91564 X 5442961 557613 -522 557091 4885870 55852 55852 4941722 6901000 0 6901000 55852 55852 6956852 PART V, LINE 4: THE ENDOWMENT CONSISTS OF FUNDS RESTRICTED IN PERPETUITY ESTABLISHED IN 2007 AND BOARD DESIGNATED ENDOWMENT FUNDS. THE ENDOWMENT IS TO SUPPORT SCLERODERMA RESEARCH . PART X, LINE 2: THE ORGANIZATION IS A NONPROFIT ORGANIZATION AS DESCRIBED IN SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES ON TRADE OR BUSINESS PROFITS GENERATED BY ACTIVITIES RELATED TO THE ORGANIZATION'S EXEMPT FUNCTION. THE ORGANIZATION MAY BE SUBJECT TO FEDERAL AND STATE INCOME TAXES FOR PROFITS GENERATED FROM TRADE OR BUSINESS ACTIVITIES UNRELATED TO THE ORGANIZATION'S EXEMPT FUNCTION. AS OF JUNE 30, 2024, MANAGEMENT BELIEVES THAT THE ORGANIZATION HAS NOT GENERATED ANY UNRELATED BUSINESS TAXABLE INCOME. THE ORGANIZATION ASSESSES THE RECORDING OF UNCERTAIN TAX POSITIONS BY EVALUATING THE MINIMUM RECOGNITION THRESHOLD AND MEASUREMENT REQUIREMENTS A TAX POSITION MUST MEET BEFORE BEING RECOGNIZED AS A BENEFIT IN THE FINANCIAL STATEMENTS. THE ORGANIZATION'S POLICY IS TO RECOGNIZE INTEREST AND PENALTIES ACCRUED ON ANY UNCERTAIN TAX POSITIONS AS A COMPONENT OF INCOME TAX EXPENSE, IF ANY, IN ITS STATEMENT OF ACTIVITIES. THE ORGANIZATION HAS NOT RECOGNIZED ANY LIABILITIES FOR UNCERTAIN TAX POSITIONS OR UNRECOGNIZED BENEFITS AS OF JUNE 30, 2024. THE ORGANIZATION DOES NOT EXPECT ANY MATERIAL CHANGE IN UNCERTAIN TAX BENEFITS WITHIN THE NEXT 12 MONTHS. PART XI, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSAL OF PROPERTY & EQUIPMENT -522. 1 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANT AWARD RESEARCH 200000 0 0 0 0 0 0 200000 0 200000 NORTH AMERICA RESEARCH GRANT 200000 CHECK PAYMENT 0 0 1 0 0 0 0 0 0 PART I, LINE 2: THE FOUNDATION IS THE LEADING NONPROFIT FUNDING SCLERODERMA RESEARCH IN THE UNITED STATES. THROUGH THIS PROGRAM, THE FOUNDATION IS COMMITTED TO DISCOVERING THE CAUSE OF THIS DISEASE, UNDERSTANDING THE MECHANISMS BEHIND IT, AND OVERCOMING SCLERODERMA FOREVER. SINCE ITS INCEPTION, THE FOUNDATION HAS COMMITTED $30 MILLION TO THIS MISSION PRIORITY. THROUGH ITS PEER REVIEWED RESEARCH GRANTS PROGRAM, THE NATIONAL SCLERODERMA FOUNDATION FOSTERS THE DEVELOPMENT OF INNOVATIVE, HIGH-QUALITY RESEARCH BY NEW AND ESTABLISHED INVESTIGATORS IN FIELDS RELATED TO SCLERODERMA. TO THAT END, THE FOUNDATION OFFERS TWO DISTINCT RESEARCH GRANTS: NATIONAL SCLERODERMA FOUNDATION NEW INVESTIGATOR GRANT AND THE NATIONAL SCLERODERMA FOUNDATION ESTABLISHED INVESTIGATOR GRANT. EACH GRANT APPLICATION DETAILS SPECIFIC ELIGIBILITY AND REVIEW CRITERIA (DETAILS REGARDING THESE REQUIREMENTS ARE AVAILABLE AT WWW.SCLERODERMA.ORG). ALL APPLICATIONS UNDERGO A RIGOROUS PEER REVIEW PROCESS COMPARABLE TO THAT OF THE NIH. THE FOUNDATION'S PEER REVIEWED RESEARCH COMMITTEE IS COMPRISED OF MEDICAL AND RESEARCH EXPERTS FROM ACROSS THE UNITED STATES, WHO USE THE SAME MERIT-BASED SCORING SYSTEM AS THE NATIONAL INSTITUTES OF HEALTH. EACH APPLICATION IS CRITIQUED, SCORED AND RANKED ACCORDING TO THE REVIEW CRITERIA AND OVERALL MERIT OF THE PROPOSED PROJECT. ONCE THE STUDY SECTION HAS REVIEWED, DISCUSSED AND RANKED THE FINAL SLATE, THE COMMITTEE ON RESEARCH PUTS FORTH FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS FOR FINAL APPROVAL. PENDING NOTICE OF AWARD, EACH RECIPIENT IS REQUIRED TO COMPLETE A FUNDING CONTRACT SIGNED BY THEIR SPONSORING ORGANIZATION COMMITTING TO COMPLETE THE PROJECT WITHIN A SPECIFIED PERIOD OF TIME, AND WITH NO SCIENTIFIC OR BUDGETARY OVERLAP. RECIPIENTS MUST ALSO SUBMIT ANNUAL PROGRESS REPORTS AND FINANCIAL RECONCILIATIONS, AND COMPLY WITH FOUNDATION POLICIES. SF NEW ENGLAND GOLF TOURNY 165234 105616 59618 59618 COCONUT CREEK FL-STEPPING OUT WALK 65090 57540 7550 7550 33 796633 625215 171418 171418 1026957 788371 238586 238586 238586 0 1 CASE WESTERN RESERVE UNIVERSITY ATTN ROBIN TRAIL 10900 EUCLID AVENUE CLEVELAND OH 44106 341018992 501(C)3 200000 0 RESEARCH KAO AUTOIMMUNITY INSTITUTE CEDARS-SINAI MEDICAL CENTER 8700 BEVERLY BLVD 6500 WIL 1800 LOS ANGELES CA 90048 951644600 501(C)3 200000 0 RESEARCH THE REGENTS OF THE UNIVERSITY OF MICHIGAN C/O BNY MELLON BOX 223131 PITTSBURGH PA 15251 386006309 501(C)3 200000 0 RESEARCH THE REGENTS OF THE UNIVERSITY OF MICHIGAN C/O BNY MELLON BOX 223131 PITTSBURGH PA 15251 386006309 501(C)3 200000 0 RESEARCH THE UNIVERSITY OF TEXAS AT EL PASO 500 W UNIVERSITY AVENUE 6TH FL EL PASO TX 79968 746000813 501(C)3 200000 0 RESEARCH VIRGINIA COMMONWEALTH UNIVERSITY GRANTS CONTRACTS ACCOUNTING PO BOX 843039 RICHMOND VA 23284 546001736 501(C)3 200000 0 RESEARCH 5 0 PRE-DOCTORAL SUMMER FELLOWSHIP AWARDS- $2,000 PER RECIPIENT 6 12000 0 PART I, LINE 2: THE FOUNDATION IS THE LEADING NONPROFIT FUNDING SCLERODERMA RESEARCH IN THE UNITED STATES. THROUGH THIS PROGRAM, THE FOUNDATION IS COMMITTED TO DISCOVERING THE CAUSE OF THIS DISEASE, UNDERSTANDING THE MECHANISMS BEHIND IT, AND OVERCOMING SCLERODERMA FOREVER. SINCE ITS INCEPTION, THE FOUNDATION HAS COMMITTED $30 MILLION TO THIS MISSION PRIORITY. THROUGH ITS PEER REVIEWED RESEARCH GRANTS PROGRAM, THE NATIONAL SCLERODERMA FOUNDATION FOSTERS THE DEVELOPMENT OF INNOVATIVE, HIGH-QUALITY RESEARCH BY NEW AND ESTABLISHED INVESTIGATORS IN FIELDS RELATED TO SCLERODERMA. TO THAT END, THE FOUNDATION OFFERS TWO DISTINCT RESEARCH GRANTS: NATIONAL SCLERODERMA FOUNDATION NEW INVESTIGATOR GRANT AND THE NATIONAL SCLERODERMA FOUNDATION ESTABLISHED INVESTIGATOR GRANT. EACH GRANT APPLICATION DETAILS SPECIFIC ELIGIBILITY AND REVIEW CRITERIA (DETAILS REGARDING THESE REQUIREMENTS ARE AVAILABLE AT WWW.SCLERODERMA.ORG). ALL APPLICATIONS UNDERGO A RIGOROUS PEER REVIEW PROCESS COMPARABLE TO THAT OF THE NIH. THE FOUNDATION'S PEER REVIEWED RESEARCH COMMITTEE IS COMPRISED OF MEDICAL AND RESEARCH EXPERTS FROM ACROSS THE UNITED STATES, WHO USE THE SAME MERIT-BASED SCORING SYSTEM AS THE NATIONAL INSTITUTES OF HEALTH. EACH APPLICATION IS CRITIQUED, SCORED AND RANKED ACCORDING TO THE REVIEW CRITERIA AND OVERALL MERIT OF THE PROPOSED PROJECT. ONCE THE STUDY SECTION HAS REVIEWED, DISCUSSED AND RANKED THE FINAL SLATE, THE COMMITTEE ON RESEARCH PUTS FORTH FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS FOR FINAL APPROVAL. PENDING NOTICE OF AWARD, EACH RECIPIENT IS REQUIRED TO COMPLETE A FUNDING CONTRACT SIGNED BY THEIR SPONSORING ORGANIZATION COMMITTING TO COMPLETE THE PROJECT WITHIN A SPECIFIED PERIOD OF TIME, AND WITH NO SCIENTIFIC OR BUDGETARY OVERLAP. RECIPIENTS MUST ALSO SUBMIT ANNUAL PROGRESS REPORTS AND FINANCIAL RECONCILIATIONS, AND COMPLY WITH FOUNDATION POLICIES. X 0 0 0 0 0 0 0 0 0 MARY J WHEATLEY CEO 218445 0 17500 0 0 0 6542 0 11038 0 253525 0 0 0 MICHAEL B HYDE VP OF FINANCE 158406 0 0 0 0 0 4725 0 29023 0 192154 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B PRIOR TO FILING, THE FORM 990 IS GIVEN TO ALL BOARD MEMBERS FOR REVIEW. ANY QUESTIONS ARE ANSWERED BY EITHER MANGEMENT OF THE ORGANIZATION OR THE INDEPENDENT AUDITOR. FORM 990, PART VI, SECTION B, LINE 12C ALL MEMBERS OF THE BOARD OF DIRECTORS SUBMIT ANNUAL DISCLOSURE STATEMENTS, WHICH ARE THEN REVIEWED BY THE COMMITTEE ON CORPORATE GOVERNANCE AND NOMINATIONS AND FILED WITH LEGAL COUNSEL. ANY MEMBER WHO GIVES NOTICE OF POTENTIAL CONFLICT IS ADVISED TO ABSTAIN FROM PARTICIPATING IN ANY ITEM OF BUSINESS RELATED TO THAT CONFLICT(S) WHICH MAY COME BEFORE THE BOARD. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS OF THE ORGANIZATION VOTES AND APPROVES THE COMPENSATION OF THE CHIEF EXECUTIVE OFFICER (CEO). THE CEO ESTABLISHES THE COMPENSATION FOR ALL OTHER EMPLOYEES OF THE ORGANIZATION. NO BOARD MEMBERS ARE COMPENSATED. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. THE ORGANIZATION'S FINANCIAL STATEMENTS ARE ALSO AVAILABLE ON THE ORGANIZATION'S WEBSITE. FORM 990, PART XI, LINE 9: LOSS ON DISPOSAL OF PROPERTY & EQUIPMENT -522. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT FOR THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THIS PROCESS HAS NOT CHANGED DURING THE YEAR.