2022-12-15T07:03:31-06:00 2022-06-30 390859910 BAKER TILLY US LLP 1 HIGHWOOD DRIVE TEWKSBURY MA 01876 990 2021-07-01 521375827 NATIONAL SCLERODERMA FOUNDATION INC NATI 8007224673 300 ROSEWOOD DRIVE 105 DANVERS MA 01923 MARY J WHEATLEY IOM CAE CHIEF EXECUTIVE OFFICER 8007224673 2022-12-14 1 MARY WHEATLEY IOM CAE 999009999 MATTHEW KALIL CPA MBA P01517069 9785575300 2022-12-14 X 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z MARY J WHEATLEY 300 ROSEWOOD DRIVE 105 DANVERS MA 01923 6739391 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. 12 12 0 0 0 0 3976045 4462430 0 0 211246 119037 1340 0 4188631 4581467 1216546 2425000 0 0 1531865 2012197 0 0 552920 1720265 1773515 4468676 6210712 -280045 -1629245 13492271 11463074 2093581 2913453 11398690 8549621 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 2074271 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. SUPPORT: THE FOUNDATION SERVES PEOPLE LIVING WITH SCLERODERMA, AS WELL AS THEIR CAREGIVERS AND FAMILY MEMBERS BY PROVIDING ACCESS TO SUPPORT GROUPS. IN THE WAKE OF THE PANDEMIC, THE FOUNDATION PIVOTED FROM IN-PERSON TO VIRTUAL COMMUNITY SUPPORT, ALLOWINGN FOR MEMBERS OF THE SCLERODERMA COMMUNITY TO CONNECT NO MATTER WHERE THEY WERE IN THE COUNTRY. THIS ALSO ALLOWED FOR THE CREATION OF MORE TARGETED, TOPICAL SUPPORT GROUPS SUCH AS ONE FOR MEN, WHICH MAKE UP JUST 20% OF THE POPULATION IMPACTED BY SCLERODERMA, AND BIPOC, AS WELL AS YOUNG ADULTS. 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. IN THE WAKE OF THE PANDEMIC, THE FOUNDATION PIVOTED FROM IN-PERSON TO VIRTUAL COMMUNITY SUPPORT, PROVIDING WORLD CLASS EDUCATION AND NETWORKING OPPORTUNITIES FOR THE COMMUNITY VIA A NATIONAL WEBINAR SERIES THAT WAS, FOR THE FIRST TIME, OFFERED VIRTUALLY. THE WEBINARS OFFERED EDUCATION AND NETWORKING OPPORTUNITIES FOR PEOPLE LIVING WITH SCLERODERMA, CAREGIVERS, FAMILY MEMBERS AND FRIENDS. IT ALSO WAS AN EXCELLENT RESOURCE FOR PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS, WHO ALSO NEED COMPREHENSIVE INFORMATION ABOUT THE DISEASE. 2747437 2425000 RESEARCH:IN 2021, THE FOUNDATION MADE A COMMITMENT TO MORE THAN DOUBLE ITS RESEARCH FUNDING, (ITS SINGLE LARGEST EXPENSE) COMITTING $2.4 MILLION IN FY 2022. THIS FUNDING AIMS TO STIMULATE AND SUPPORT RESEARCH TO BETTER UNDERSTAND 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 OVER MULTIPLE YEARS. IN FY 2022, FIVE AWARDS WERE TWO-YEAR ESTABLISHED INVESTIGATOR AWARDS, AND SEVEN AWARDS WERE THREE-YEAR NEW INVESTIGATOR AWARDS. NEW INVESTIGATOR AWARDS ARE INTENDED TO HELP EMERGING SCIENTISTS GATHER SUFFICIENT DATA TO DEMONSTRATE THE VALUE OF THEIR AREA 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.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 BY HIGHLY RESPECTED SCIENTIFIC EXPERTS IN THE FIELD. ONLY PROJECTS OF SIGNIFICANT SCIENTIFIC MERIT ARE RECOMMENDED FOR FUNDING. 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 AND 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. 4821708 1 1 0 0 0 0 0 0 0 1 1 0 0 0 1 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 10 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 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 KEVIN BOYANOWSKI 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 JEANNE THEISSEN DIRECTOR (SINCE JUL 2021) 2.00 X 0 0 0 MARK OROZCO DIRECTOR 2.00 X 0 0 0 LINDA BAUM DIRECTOR 2.00 X 0 0 0 MARCIA WALKER DIRECTOR 2.00 X 0 0 0 COS MALLOZZI CHAIR 2.00 X X 0 0 0 CAROL FEGHALI-BOSTWICK PHD VICE CHAIR 2.00 X X 0 0 0 MIKE LEVENGOOD SECRETARY 2.00 X X 0 0 0 CYNDY BESSELIEVRE TREASURER (SINCE JUL 2021) 2.00 X X 0 0 0 GREG MARION TREASURER (UNTIL JUL 2021) 2.00 X X 0 0 0 MARY J WHEATLEY CEO (SINCE JULY 1, 2021) 40.00 X 101145 0 6901 ROBERT J RIGGS CEO (UNTIL DEC 2021) 40.00 X 83028 0 11946 MICHAEL B HYDE COO/CFO 40.00 X 129165 0 30215 313338 0 49062 2 0 1 0 BLACKBAUD INC PO BOX 930256 ATLANTA GA 31193 WEBSITE SUPPORT 205065 ROBERT HALFACCOUNTEMPS 12400 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 TEMPORARY STAFFING SERVICES 132631 2 443271 249960 3769199 4462430 175431 175431 2015843 2072237 -56394 -56394 -56394 85687 443271 85687 0 4581467 0 0 119037 2425000 2425000 419642 145067 249564 25011 1348328 999695 235225 113408 17145 14428 1137 1580 89123 77337 2919 8867 137959 91018 35983 10958 60000 7923 52077 47550 47550 25203 25203 456014 353887 102127 21037 11756 1910 7371 172177 81553 13857 76767 371766 223060 74353 74353 192742 116058 38342 38342 65808 39500 13154 13154 113863 107013 3488 3362 15701 9421 3140 3140 77111 46267 15422 15422 FEES AND LICENSES 140247 68280 22760 49207 OUTREACH 14296 4445 0 9851 6210712 4821708 836084 552920 X 2533564 2683332 156814 406750 635411 215013 185646 236757 206770 21456 29987 10105147 7887043 53527 41655 13492271 11463074 235306 208675 1525000 2620835 11051 4529 249960 72264 79414 2093581 2913453 X 9261793 6893709 2136897 1655912 11398690 8549621 13492271 11463074 -1629245 -1219824 0 X X 0 1 X 1 0 X 4193403 4326448 3405450 3721793 4462430 20109524 4193403 4326448 3405450 3721793 4462430 20109524 1811669 18297855 169963 175015 180407 167751 175431 868567 20978091 332742 0.87220 0.87280 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1881204 -155307 69985 1655912 1658720 293349 70865 1881204 1627038 31682 101713 101713 1658720 1662877 115953 151792 1627038 1916225 65063 318411 1662877 1.00000 0 0 12343 8913 3430 137386 118804 18582 87028 79053 7975 29987 DUE TO AFFILIATES 79414 79414 X 3336440 -1219824 -1219824 4556264 25203 25203 4581467 6185509 0 6185509 25203 25203 6210712 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, 2022, 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, 2022. THE ORGANIZATION DOES NOT EXPECT ANY MATERIAL CHANGE IN UNCERTAIN TAX BENEFITS WITHIN THE NEXT 12 MONTHS. 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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 MICHAEL B HYDE COO/CFO 129165 0 0 0 0 0 3894 0 26321 0 159380 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 X, COLUMN A, LINE 27 AND LINE 28 PRIOR YEAR NET ASSETS WITHOUT DONOR RESTRICTIONS WERE RESTATED FOR THE YEAR ENDING JUNE 30, 2022 FROM $9,600,665 TO $9,261,793. PRIOR YEAR NET ASSETS WITH DONOR RESTRICTIONS WERE RESTATED FOR THE YEAR ENDING JUNE 30, 2022 FROM $1,798,025 TO $2,136,897. 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.