2022-01-27T13:44:31-06:00 2021-06-30 390859910 BAKER TILLY US LLP 1 HIGHWOOD DRIVE TEWKSBURY MA 01876 990 2020-07-01 521375827 NATIONAL SCLERODERMA FOUNDATION INC NATI 8007224673 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 MARY J WHEATLEY IOM CAE CHIEF EXECUTIVE OFFICER 8007224673 2022-01-26 1 MARY WHEATLEY IOM CAE 999009999 MATTHEW KALIL CPA MBA P01517069 9785575300 2022-01-24 X 3 AAL1 IAL1 2020 2022-09-23 18:48:47Z X MARY J WHEATLEY 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 10199282 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 24 450 0 0 3405450 3976045 128846 0 247976 211246 29435 1340 3811707 4188631 1200545 1216546 0 0 1415946 1531865 0 0 226189 2395570 1720265 5012061 4468676 -1200354 -280045 11612013 13492271 2097634 2093581 9514379 11398690 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 2210880 EDUCATION AND SUPPORT:THE NATIONAL SCLERODERMA FOUNDATION PROVIDES EDUCATIONAL PROGRAMS FOR THOSE AFFECTED BY SCLERODERMA, AND THEIR HEALTHCARE PROVIDERS. THESE INCLUDE CHAPTER EDUCATIONAL EVENTS HELD IN PARTNERSHIP WITH LOCAL ACADEMIC CENTERS, AS WELL AS ONLINE WEBINARS AND OTHER VIRTUAL OPPORTUNITIES. THE FOUNDATION'S SIGNATURE NATIONAL SCLERODERMA CONFERENCE AND KIDS GET SCLERODERMA, TOO! CONFERENCE PROVIDE ACCESS TO WORLD-RENOWNED SCLERODERMA EXPERTS AND ARE THE CENTRAL MEETING GROUND OF THE SCLERODERMA COMMUNITY. IN ADDITION TO EDUCATIONAL PROGRAMS, THE NATIONAL SCLERODERMA FOUNDATION HOSTS 160 SUPPORT GROUPS ACROSS THE COUNTRY WHERE PEOPLE DIAGNOSED WITH SCLERODERMA, AND THEIR FRIENDS AND FAMILIES CAN COME TOGETHER IN A PEER SUPPORT NETWORK AND LEARN FROM ONE ANOTHER'S EXPERIENCES WITH THE DISEASE. THIS TYPE OF SUPPORT IS CRITICAL TO SUCCESSFULLY NAVIGATING DIAGNOSIS, PROGNOSIS AND TREATMENT IN A COMPLEX DISEASE LIKE SCLERODERMA. HAVING A STRONG SUPPORT SYSTEM IMPROVES OUTCOMES FOR THOSE LIVING WITH CHRONIC ILLNESS, AND IS AN IMPORTANT PART OF LIVING WELL WITH SCLERODERMA. 1267100 1216546 1340 RESEARCH:THE FOUNDATION IS THE LEADING NONPROFIT FUNDING SCLERODERMA RESEARCH IN THE UNITED STATES. 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. 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. 3477980 1 1 0 0 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 0 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 9 0 1 24 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 0 0 1 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 NO 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 MARY BETH TOURBIN DIRECTOR (UNTIL NOV '20) 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 CYNDY BESSELIEVRE 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 GREG MARION TREASURER 2.00 X X 0 0 0 ROBERT J RIGGS CEO 40.00 X 119708 0 14323 MICHAEL B HYDE COO/CFO 40.00 X 119808 0 27369 KERRI CONNOLLY NAT. DIRECTOR OF PROGRAMS & SERV. 40.00 X 102480 0 13093 341996 0 54785 3 0 0 0 COPLEY RAFF 164 BROOK FARM ROAD 164 BOSTON MA 02132 ORGANIZATIONAL CONSULTANTS 181409 BLACKBAUD INC PO BOX 930256 ATLANTA GA 31193 WEBSITE SUPPORT 175471 BROGAN & PARTNERS 800 N OLD WOODWARD AVE SUITE 100 BIRMINGHAM MI 48009 EVENT & EDUCATION SERVICES 129167 3 73619 504214 3398212 3976045 167751 167751 5975548 5932053 43495 43495 43495 78598 73619 78598 0 RETURNED GRANT AWARDS 900099 1340 1340 1340 4188631 1340 0 211246 1066546 1066546 150000 150000 298613 78406 206689 13518 1022900 781338 154321 87241 12840 9997 1311 1532 100849 76452 12534 11863 96663 64453 24691 7519 12 12 31238 31238 51953 51953 381848 284768 67123 29957 9362 7178 2184 122472 83210 21633 17629 301743 177394 95321 29028 173190 123386 38178 11626 8339 5562 2777 46269 45083 1166 20 366743 366743 13544 8826 3615 1103 65247 38358 20612 6277 FEES AND LICENSES 82299 48911 25594 7794 ADVOCACY 50468 50468 MISCELLANEOUS 12908 8271 3555 1082 OUTREACH 2630 2630 4468676 3477980 764507 226189 2170807 2533564 205356 156814 58410 406750 135016 215013 212525 191069 28142 21456 8726153 10105147 288129 53527 11612013 13492271 185509 235306 1587500 1525000 11051 249962 249960 74663 72264 2097634 2093581 X 7711504 9600665 1802875 1798025 9514379 11398690 11612013 13492271 -280045 2164356 0 X X 0 1 X 1 0 X 4581460 4193403 4326448 3405450 3721793 20228554 4581460 4193403 4326448 3405450 3721793 20228554 1823447 18405107 166672 169963 175015 180407 167751 859808 21088362 439548 0.87280 0.85740 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1658720 222527 293349 293349 1881247 1627038 31682 101713 101713 1658720 1662877 115953 151792 1627038 1916225 65063 318411 1662877 1886371 114671 84817 1916225 0.18000 0.82000 0 0 8393 8393 0 125804 104348 21456 78328 78328 0 21456 DUE TO AFFILIATES 72264 72264 X 6301034 2164356 2164356 4136678 51953 51953 4188631 4416723 0 4416723 51953 51953 4468676 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 CORPORATION 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, 2021, 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, 2021. THE ORGANIZATION DOES NOT EXPECT ANY MATERIAL CHANGE IN UNCERTAIN TAX BENEFITS WITHIN THE NEXT 12 MONTHS. 1 0 0 0 0 0 0 0 0 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 150000 WIRE TRANSFER 0 1 0 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. PART III ACCOUNTING METHOD: IMAGINE CAMPAIGN -ROCKY MTN. CHAPTR 32910 15917 16993 16993 DETROIT STEPPING OUT WALK 17948 8680 9268 9268 27 101359 49022 52337 52337 152217 73619 78598 78598 78598 0 0 HOSPITAL FOR SPECIAL SURGERY 535 EAST 70TH STREET NEW YORK NY 10021 131624135 501(C)3 150000 0 RESEARCH TRUSTEES OF BOSTON UNIVERSITY BUMC 85 EAST NEWTON STREET M-921 BOSTON MA 02118 042103547 501(C)3 150000 0 RESEARCH UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE PITTSBURGH PA 15213 250965591 501(C)3 150000 0 RESEARCH TUFTS UNIVERSITY 136 HARRISON AVENUE BOSTON MA 02111 042103634 501(C)3 150000 0 RESEARCH CLEVELAND CLINIC LERNER RESEARCH INSTITUTE 9500 EUCLID AVENUE CLEVELAND OH 44195 340714585 501(C)3 150000 0 RESEARCH THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON 7000 FANNIN ST UCT 1000 HOUSTON TX 77030 741761309 501(C)3 150000 0 RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO THE REGENTS OF THE UNIVERSITY OF CALIFORNIA UCSD 95 GILMAN DRIVE 093 LA JOLLA CA 92093 956006144 501(C)3 150000 0 RESEARCH 7 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. FORM 990, PART VI, SECTION A, LINE 4 THE ORGANIZATION CHANGED ITS NAME FROM SCLERODERMA FOUNDATION, INC. TO NATIONAL SCLERODERMA FOUNDATION, INC. ON SEPTEMBER 23, 2021. 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 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.