2018-04-30T06:51:42-05:00 2017-06-30 043077056 MOODY FAMIGLIETTI & ANDRONICO LLP 1 HIGHWOOD DRIVE TEWKSBURY MA 01876 990 2016-07-01 521375827 SCLERODERMA FOUNDATION INC SCLE 8007224673 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 ROBERT J RIGGS CHIEF EXECUTIVE OFFICER 8007224673 2018-04-27 1 JOYCE RIPIANZI CPA P00548581 9785575300 64.27.39.203 2018-04-27 08:57:18 ED P 317E8747876FC67392754136350CB4FA072B998C E1D2BF9BD6EE0870F11924BD59E9D7BF96EE3504 2016 2021-01-29 14:40:06Z ROBERT J RIGGS 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 10409431 0 X WWW.SCLERODERMA.ORG X 1993 IL SCLERODERMA FOUNDATION, INC. IS A NONPROFIT ORGANIZATION DEDICATED TO THE CONCERNS OF PEOPLE WHOSE LIVES HAVE BEEN IMPACTED BY THE AUTOIMMUNE DISEASE SCLERODERMA (A.K.A. SYSTEMIC SCLEROSIS), AND RELATED CONDITIONS. ITS THREE FOLD MISSION OF SUPPORT, EDUCATION AND RESEARCH GUIDES THE ORGANIZATION'S WORK IN PROVIDING EDUCATION PROGRAMS FOR PATIENTS AND THEIR FAMILIES, PEER-TO-PEER SUPPORT THROUGH ITS NATIONWIDE NETWORK OF CHAPTERS AND SUPPORT GROUPS, AND ADVOCACY EFFORTS TO INCREASE AWARENESS OF THE DISEASE AMONG THE GENERAL PUBLIC AND MEDICAL COMMUNITY. THE ORGANIZATION ALSO HAS A RESEARCH PROGRAM THAT FUNDS CLINICAL AND BENCH RESEARCH TO FIND TREATMENT MODALITIES, THE CAUSE, AND HOPEFULLY THE CURE FOR SCLERODERMA AND RELATED CONDITIONS. 10 10 30 711 0 0 3939641 4581460 91015 106806 208482 468214 99206 8756 4338344 5165236 1649990 1581496 0 0 944258 1131853 0 0 203168 2341508 2497971 4935756 5211320 -597412 -46084 12011971 12288226 2360474 2219558 9651497 10068668 X SCLERODERMA FOUNDATION, INC. IS A NONPROFIT ORGANIZATION DEDICATED TO THE CONCERNS OF PEOPLE WHOSE LIVES HAVE BEEN IMPACTED BY THE AUTOIMMUNE DISEASE SCLERODERMA (A.K.A. SYSTEMIC SCLEROSIS), AND RELATED CONDITIONS. ITS THREE FOLD MISSION OF SUPPORT, EDUCATION AND RESEARCH GUIDES THE ORGANIZATION'S WORK IN PROVIDING EDUCATION PROGRAMS FOR PATIENTS AND THEIR FAMILIES, PEER-TO-PEER SUPPORT THROUGH ITS NATIONWIDE NETWORK OF CHAPTERS AND SUPPORT GROUPS, AND ADVOCACY EFFORTS TO INCREASE AWARENESS OF THE DISEASE AMONG THE GENERAL PUBLIC AND MEDICAL COMMUNITY. THE ORGANIZATION ALSO HAS A RESEARCH PROGRAM THAT FUNDS CLINICAL AND BENCH RESEARCH TO FIND TREATMENT MODALITIES, THE CAUSE, AND HOPEFULLY THE CURE FOR SCLERODERMA AND RELATED CONDITIONS. 0 0 1566366 1581496 8756 RESEARCH:A. THE SCLERODERMA FOUNDATION PROVIDES FUNDS FOR CLINICAL AND BENCH RESEARCH FOCUSED ON SCLERODERMA/SYSTEMIC SCLEROSIS AND COMORBID CONDITIONS THROUGH A PEER REVIEW RESEARCH PROGRAM MODELED ON PROTOCOLS SET FORTH BY THE NATIONAL INSTITUTES OF HEALTH. 2792323 106806 EDUCATION AND SUPPORT:1. SUPPORT: A. THE SCLERODERMA FOUNDATION PROVIDES INFORMATIONAL AND EMOTIONAL SUPPORT TO THOSE WHOSE LIVES HAVE BEEN IMPACTED BY THIS DISEASE THROUGH A VARIETY OF SERVICES INCLUDING:I. A NATION-WIDE NETWORK OF ACTIVE SUPPORT GROUPSII. A TOLL-FREE HELPLINE WHERE PATIENTS CAN CONNECT WITH TRAINED STAFF TO ASSIST WITH QUESTIONSIII. REFERRALS TO PHYSICIANS AND OTHER MEDICAL PROFESSIONALS WHO ARE EXPERTS IN SCLERODERMA-RELATED ISSUESIV. ONLINE FORUMS FOR PEER-TO-PEER SUPPORT AND INFORMATION EXCHANGESV. WEEKLY AND QUARTERLY PUBLICATIONS FOCUSED ON ISSUES OF CONCERN AND IMPORTANCE TO THE SCLERODERMA COMMUNITY2. EDUCATION: A. THE SCLERODERMA FOUNDATION PROVIDES EDUCATIONAL OPPORTUNITIES TO PATIENTS AND FAMILY MEMBERS FOCUSED ON DISEASE MANAGEMENT, AND BEST PRACTICES TO ENSURE THE HIGHEST POSSIBLE QUALITY OF LIFE WHILE COPING WITH A CHRONIC AND DEBILITATING DISEASE. EDUCATIONAL PROGRAMS INCLUDE:I. NATIONAL AND REGIONAL CONFERENCES AND SYMPOSIAII. CONTINUOUSLY UPDATED LITERATURE ON A RANGE OF TOPICS AND ISSUES RELATED TO SCLERODERMA DISEASE MANAGEMENT VIA PRINT AND WEBIII. ONLINE FORUMS AND WEBINARSB. THE SCLERODERMA FOUNDATION ENGAGES IN OUTREACH AND EDUCATION INITIATIVES TO THE MEDICAL COMMUNITY TO ENHANCE AWARENESS AND UNDERSTANDING AMONG MEDICAL AND ALLIED HEALTHCARE PROFESSIONALS, INCLUDING:I. CONTINUING MEDICAL EDUCATION PROGRAMSII. CONTINUING NURSE EDUCATION PROGRAMSIII. PARTICIPATION AT KEY MEDICAL/SCIENTIFIC CONFERENCEIV. SUPPORTING NATIONAL AND INTERNATIONAL MEDICAL/SCIENTIFIC MEETINGS FOCUSED ON RESEARCH AND TREATMENT OF SCLERODERMA AND COMORBID CONDITIONS 4358689 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 13 0 1 30 1 0 0 0 0 0 0 0 0 0 0 X 10 10 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X THE ORGANIZATION 8007224673 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 KEVIN BOYANOWSKI DIRECTOR 2.00 X 0 0 0 JANE LADAS DIRECTOR 2.00 X 0 0 0 MIKE LEVENGOOD DIRECTOR 2.00 X 0 0 0 MARY BLADES DIRECTOR 2.00 X 0 0 0 KATAYUN JAFFARI DIRECTOR 2.00 X 0 0 0 MARK OROZCO 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 BILL MARTIN 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 110230 0 12099 110230 0 12099 1 0 0 0 BLACKBAUD INC PO BOX 930256 ATLANTA GA 31193 WEBSITE SUPPORT 191024 1 620947 3960513 4581460 REGISTRATION FEES 611710 106806 106806 106806 166672 166672 5254773 4953231 301542 301542 301542 290964 620947 290964 0 RETURNED GRANT AWARDS 900099 8756 8756 8756 5165236 115562 0 468214 1522909 1522909 58587 58587 122329 70950 39145 12234 849864 574005 211679 64180 11448 7886 2737 825 66816 40376 20286 6154 81396 54084 20936 6376 2003 2003 26820 26820 222243 173081 30957 18205 63344 60975 1799 570 190455 108102 46896 35457 257313 151274 81285 24754 175904 123677 40035 12192 142093 106335 33189 2569 680498 653302 27187 9 411529 411529 19284 11439 6014 1831 70136 41235 22156 6745 BANK CHARGES AND WEB DO 99809 59516 30887 9406 ADVOCACY 92926 92926 MISCELLANEOUS 37117 30004 5452 1661 OUTREACH 6497 6497 5211320 4358689 649463 203168 1379719 2389165 482976 621245 75000 39149 24166 39312 165547 132029 156184 148602 10714 7582 9586594 8854401 287255 205343 12011971 12288226 180399 218446 2012112 1853834 84851 87425 83112 59853 2360474 2219558 X 7834454 8253413 274668 272880 1542375 1542375 9651497 10068668 12011971 12288226 -46084 463255 0 X X 0 1 X 1 0 X 4202914 4005291 4662117 3939641 4581460 21391423 4202914 4005291 4662117 3939641 4581460 21391423 2920189 18471234 168470 186027 176313 172568 166672 870050 2161 2161 22263634 441827 0.82970 0.82980 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1886371 114671 84817 1916225 2056133 30238 200000 1886371 2051305 4828 2056133 1885727 165578 2051305 1819237 66490 1885727 0.20000 0.80000 0 0 2000 2000 8393 8393 0 75101 69519 5582 70690 70690 0 7582 DUE TO AFFILIATES 59853 59853 X 5619735 463255 463255 5156480 8756 8756 5165236 5202564 -8756 -8756 5211320 0 5211320 PART V, LINE 4: THE ENDOWMENT CONSISTS OF A PERMANENTLY RESTRICTED FUND ESTABLISHED IN 2007. THE ENDOWMENT IS TO SUPPORT RESEARCH FOR THE DISEASE SCLERODERMA. 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 UNRELATED TRADE OR BUSINESS INCOME. THE ORGANIZATION HAS DETERMINED THAT IT DOES NOT HAVE ANY LIABILITIES ASSOCIATED WITH UNRELATED TRADE OR BUSINESS INCOME AND AS A RESULT, NO PROVISION FOR INCOME TAXES IS PRESENTED IN THESE FINANCIAL STATEMENTS. 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. PART XI, LINE 4B - OTHER ADJUSTMENTS: RETURNED GRANT AWARDS 8,756. PART XII, LINE 2D - OTHER ADJUSTMENTS: RETURNED GRANT AWARDS -8,756. FLORIDA STEPPING OUT WALK 60827 52493 8334 8334 GEORGIA HIKING & HOTCAKES WALK 50593 44494 6099 6099 58 800491 523960 276531 276531 911911 620947 290964 290964 290964 0 0 BALTIMORE RESEARCH AND EDUCATION FOUNDATION 10 N GREENE STREET ROOM 3D150 BALTIMORE MD 21201 521705976 501(C)3 150000 RESEARCH UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE LOWER LEVEL PITTSBURG PA 15213 251423657 501(C)3 150000 RESEARCH NORTHWESTERN UNIVERSITY 750 N LAKESHORE DRIVE CHICAGO IL 60611 362167817 501(C)3 150000 RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVE SUITE 606 CHARLESTON SC 29403 576028985 501(C)3 150000 RESEARCH BRIGHAM AND WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)3 150000 RESEARCH JOHN HOPKINS UNIVERSITY SCHOOL OF MEDICINE 733 N BROADWAY SUITE 117 BALTIMORE MD 21205 520595110 501(C)3 150000 RESEARCH THOMAS JEFFERSON UNIVERSITY 125TH S 9TH ST 2ND FL SHERIDAN BLDG BLDG PHILADELPHIA PA 19107 232829095 501(C)3 122909 RESEARCH TRUSTEES OF BOSTON UNIVERSITY BUMC GRANTS RECEIVABLE PO BOX 28763 28763 NEW YORK NY 10087 042103547 501(C)3 500000 RESEARCH 8 0 NATIONAL CONFERENCE SCHOLARSHIP 54 58587 PART I, LINE 2: AS PART OF ITS MISSION, THE SCLERODERMA FOUNDATION GIVES GRANTS TO RESEARCHERS WORKING TO FIND BETTER TREATMENTS, THE CAUSE AND, HOPEFULLY, THE CURE FOR SCLERODERMA AND RELATED COMORBID CONDITIONS. THE FOUNDATION FUNDS BOTH CLINICAL AND BENCH RESEARCH FROM NEW AND ESTABLISHED INVESTIGATORS. SPECIFIC CRITERIA HAVE BEEN SET AND MUST BE MET IN THE RESEARCH GRANT PROPOSAL IN ORDER FOR IT TO BE CONSIDERED FOR FUNDING. COMPLETE GUIDELINES ARE AVAILABLE ON THE SCLERODERMA FOUNDATION WEB SITE AT WWW.SCLERODERMA.ORG/RESEARCH. TO HELP ENSURE THAT THE FOUNDATION FUNDS THE MOST PROMISING RESEARCH IN A NON-BIASED MANNER, IT HAS A LONG-STANDING PEER REVIEW PROGRAM THAT MIRRORS THE REVIEW AND FUNDING PROTOCOLS ESTABLISHED BY THE NATIONAL INSTITUTES OF HEALTH (NIH). IN THE PEER REVIEW PROCESS, AN INDEPENDENT PANEL OF EXPERTS IS CREATED THAT REVIEWS, EVALUATES AND SCORES EACH OF THE GRANT SUBMISSIONS. EVERY GRANT APPLICATION HAS A PRIMARY AND SECONDARY PEER REVIEWER WHO INDEPENDENTLY EVALUATES AND SCORES THE GRANT APPLICATION. SCORES RANGE FROM 1 (THE HIGHEST LEVEL) TO 3 (THE LOWEST LEVEL), WITH FRACTIONAL RANGES IN BETWEEN (I.E., SCORES OF 2.5, 2.8, ETC.). THESE TWO SCORES ARE THEN DISCUSSED BY THE ENTIRE PEER REVIEW PANEL OF EXPERTS WHO WEIGH IN ON THE QUALITY OF THE SCIENCE PROPOSED IN THE GRANT REQUEST. SUCCESS OF A GRANT APPLICATION IS BASED ON AN AVERAGE SCORE OF THE PEER REVIEW COMMITTEE. THE SCLERODERMA FOUNDATION'S PEER REVIEW GUIDELINES HAVE ESTABLISHED THAT A SCORE OF 2 OR HIGHER IS REQUIRED TO BE CONSIDERED A FUNDABLE GRANT. THOSE THAT SCORE LOWER THAN A 2 ARE REJECTED. THE SCLERODERMA FOUNDATION ALSO PROVIDES A LIMITED NUMBER OF SCHOLARSHIPS FOR PATIENTS AND CAREGIVERS TO ATTEND ITS ANNUAL NATIONAL PATIENT EDUCATION CONFERENCE. DONORS GIVE SPECIFICALLY TO SUPPORT THE CONFERENCE SCHOLARSHIP FUND AND ALL FUNDS GIVEN FOR THIS PURPOSE ARE USED TO FUND FULL OR PARTIAL SCHOLARSHIPS, BASED ON A DEMONSTRATED FINANCIAL NEED. A CONFIDENTIAL APPLICATION PROCESS FOR APPLYING FOR SCHOLARSHIP FUNDS HAS BEEN ESTABLISHED, THAT INCLUDES THE SUBMISSION OF THE APPLICANTS' MOST RECENT INCOME TAX RETURN TO HELP VERIFY FINANCIAL NEED. AN INDEPENDENT COMMITTEE COMPRISED OF SCLERODERMA PATIENTS, BOARD MEMBERS, AND STAFF REVIEW AND SCORE APPLICATIONS. FULL GUIDELINES FOR THE NATIONAL PATIENT EDUCATION CONFERENCE SCHOLARSHIP FUND CAN BE FOUND ON THE FOUNDATION'S WEBSITE AT WWW.SCLERODERMA.ORG/CONFERENCE. 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 A WRITTEN CONFLICT OF INTEREST POLICY IS ESTABLISHED WHICH DESCRIBES AND PROHIBITS TRANSACTIONS AND/OR RELATIONSHIPS WHICH MIGHT BE CONSTRUED AS A CONFLICT OF INTEREST. BOARD MEMBERS MUST SIGN OFF ON THE CONFLICT OF INTEREST POLICY ON AN ANNUAL BASIS. 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.