2013-02-12T13:23:47-06:00 2012-06-30 043077056 MOODY FAMIGLIETTI & ANDRONICO LLP 1 HIGHWOOD DRIVE TEWKSBURY MA 01876 990 2011-07-01 521375827 SCLERODERMA FOUNDATION INC SCLE 8007224673 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 ROBERT J RIGGS 8007224673 2013-02-07 1 JOYCE RIPIANZI P00548581 9785575300 2011 2016-03-07 17:11:31Z ROBERT J RIGGS 300 ROSEWOOD DRIVE NO 105 DANVERS MA 01923 5639924 0 X WWW.SCLERODERMA.ORG X 1993 MA 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 31 650 0 0 5284388 4193311 12262 70765 191905 168825 204118 115 5692673 4433016 1316913 1727178 0 0 714603 700054 0 0 191112 3380325 2018926 5411841 4446158 280832 -13142 11045930 10615606 1560031 1432774 9485899 9182832 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 2092256 1200000 RESEARCH AND EDUCATION:1. 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. B. THE SCLERODERMA FOUNDATION ALSO PROVIDES MENTORING OPPORTUNITIES FOR YOUNG INVESTIGATORS ENTERING THE FIELD OF SCLERODERMA RESEARCH 2. 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 MEDCIAL 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 1645995 527178 70765 SUPPORT AND ADVOCACY:A.THE SCLERODERMA 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 EXPERT 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 COMMUNITYB.ADVOCACY:I.THE SCLERODERMA FOUNDATION PARTICIPATES IN NUMEROUS NATIONAL COALITIONS FOCUSED ON ENHANCING UNDERSTANDING AND SUPPORT FOR AUTOIMMUNE DISORDERS, WOMENS HEALTH ISSUES AND RARE DISEASESII.THE SCLERODERMA FOUNDATION ENGAGES WITH MEDICAL EXPERTS, LOCAL AND NATIONAL LEADERS, AND OTHER THOUGHT LEADERS TO ENHANCE AWARENESS AND UNDERSTANDING ABOUT SCLERODERMA AND ISSUES OF CONCERN TO THE SCLERODERMA PATIENT COMMUNITY. 3738251 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 0 1 15 0 1 31 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 JOSEPH P CAMERINO PHD 2.00 X X 0 0 0 CAROL FEGHALI-BOSTWICK PHD 2.00 X X 0 0 0 COS MALLOZZI 2.00 X X 0 0 0 KERRY HALL 2.00 X 0 0 0 ROBERT KACICK 2.00 X 0 0 0 LEE ROY JONES 2.00 X 0 0 0 GREG MARION 2.00 X 0 0 0 MARY BLADES 2.00 X 0 0 0 MARIE COYLE 2.00 X 0 0 0 BOB SLAPPEY 2.00 X 0 0 0 ROBERT J RIGGS 40.00 X 101030 0 17634 101030 0 17634 1 0 0 0 0 266737 192680 3733894 4193311 REGISTRATION FEES 611710 70765 70765 70765 165989 165989 1202140 1199304 2836 2836 2836 7604 192680 7604 0 MISCELLANEOUS 900099 115 115 115 4433016 70765 0 168940 1706041 1706041 21137 21137 116270 53484 34881 27905 455991 259628 163986 32377 7675 4488 2824 363 60630 34519 21803 4308 59488 31752 21879 5857 3524 2042 1104 378 42094 15141 20074 6879 41377 41377 30208 26328 2890 990 13925 13925 192997 106174 23482 63341 59112 32493 20625 5994 106340 58357 37218 10765 96364 65344 30656 364 402251 398682 2351 1218 7642 4201 2666 775 52329 28916 18079 5334 CHAPTER AND AFFILIATE E 769924 769924 ADVOCACY 65234 65234 BANK CHARGES AND WEB DO 36719 698 12678 23343 BAD DEBTS 32181 32181 66705 7562 58222 921 4446158 3738251 516795 191112 185385 1107537 1722970 764052 29288 70000 568752 3953 88805 312877 135085 108460 34269 26625 6120516 8108783 2295945 221779 11045930 10615606 143552 95152 1322966 1237500 61750 51775 31763 48347 1560031 1432774 X 6510599 6841361 1432925 799096 1542375 1542375 9485899 9182832 11045930 10615606 X -13142 -289925 X X 0 1 1 X 0 X 4225936 5790608 4284391 5488506 4191501 23980942 4225936 5790608 4284391 5488506 4191501 23980942 3289274 20691668 124868 210074 204709 109160 166728 815539 524 115 639 24797120 129062 0.83440 0.88610 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1814793 4444 1819237 1542375 272418 1814793 1542375 1542375 437042 1105343 -88792 1453593 0.84780 0.15220 0 0 2000 2000 8393 8393 0 54002 29377 24625 70690 70690 0 26625 DUE TO AFFILIATES 48347 48347 4433016 4446158 -13142 -191140 -98785 -289925 -303067 4242916 -191140 1040 -190100 4433016 0 4433016 4447198 1040 1040 4446158 0 4446158 DESCRIPTION OF INTENDED USE OF ENDOWMENT FUNDS: 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. DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X: 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. THE ORGANIZATION HAS NOT RECOGNIZED ANY LIABILITIES FOR UNCERTAIN TAX POSITIONS OR UNRECOGNIZED BENEFITS AS OF JUNE 30, 2012. THE ORGANIZATION DOES NOT EXPECT ANY MATERIAL CHANGES IN UNCERTAIN TAX BENEFITS WITHIN THE NEXT TWELVE MONTHS. AS OF JUNE 30, 2012, THE ORGANIZATION IS NOT CURRENTLY UNDER EXAMINATION BY ANY TAXING AUTHORITIES. THE ORGANIZATION'S U.S. FEDERAL AND MASSACHUSETTS TAX RETURNS ARE GENERALLY OPEN FOR EXAMINATION FOR THREE YEARS FROM THE DATE OF FILING. STEPPING OUT 101701 94097 7604 7604 COOKING UP A STORM 18015 18015 10 80568 80568 200284 192680 7604 7604 7604 0 0 MA GENERAL HOSPITAL 101 HUNTINGTON AVE BOSTON MA 02199 041564655 501(C)3 150000 RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVE SUITE 606 MSC 808 CHARLESTON SC 29425 576028985 501(C)3 150000 RESEARCH UNIVERSITY OF MIAMI PO BOX 016964 MIAMI FL 33101 590624458 501(C)3 150000 RESEARCH UNIVERSITY OF TEXAS SOUTHWESTERN PO BOX 20036 HOUSTON TX 77225 741769336 501(C)3 150000 RESEARCH NORTHWESTERN UNIVERSITY 750 N LAKESHORE DRIVE CHICAGO IL 60611 362167817 501(C)3 150000 RESEARCH BOSTON UNIVERSITY 1010 MASSACHUSETTS AVE BOSTON MA 02118 042103547 501(C)3 150000 RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVE SUITE 606 MSC 808 CHARLESTON SC 29425 576028985 501(C)3 150000 RESEARCH BOSTON UNIVERSITY 1010 MASSACHUSETTS AVE BOSTON MA 02118 042103547 501(C)3 150000 RESEARCH SF OF GREATER CHICAGO 134 N LASALLE ST SUITE 1360 CHICAGO IL 60602 363238642 501(C)3 170631 SUPPORT AND ADVOCACY SCLERODERMA FDN DELAWARE VALLEY 385 NORTH KINGS HIGHWAY CHERRY HILL NJ 08034 232532453 501(C)3 41270 SUPPORT AND ADVOCACY SCLERODERMA FDN NE CHAPTER 462 BOSTON STREET SUITE 1-1 TOPSFIELD MA 01983 222603572 501(C)3 57706 SUPPORT AND ADVOCACY SCLERODERMA FND TRI-STATE CHAPTER 59 FRONT STREET BINGHAMTON NY 13905 133128296 501(C)3 110317 SUPPORT AND ADVOCACY SCLERODERMA FDN GREATER WASHINGTON DC 2070 CORPORATE RIDGE 7TH FLOOR MCLEAN VA 22102 541569782 501(C)3 47102 SUPPORT AND ADVOCACY SCLERODERMA FDN MN CHAPTER PO BOX 385246 BLOOMINGTON MN 55438 411802254 501(C)3 15144 SUPPORT AND ADVOCACY SCLERODERMA FDN SO CALIFORNIA CHAPTER 10319 JEFFERSON BLVD CULVER CITY CA 90232 232532453 501(C)3 45305 SUPPORT AND ADVOCACY SCLERODERMA FDN WESTERN PA CHAPTER 3500 TERRACE STREET SOUTH PITTSBURGH PA 15261 251687199 501(C)3 18566 SUPPORT AND ADVOCACY WALTER COYLE SCHOLARSHIPS 12 21137 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, 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 FUNDS TO ITS CHAPTERS AND AFFILIATES THROUGH A "CENTRAL FUND FOR CHAPTER/REGIONAL INITIATIVES." THESE FUNDS ARE PROVIDED FOR THE PURPOSES OF UNDERWRITING A PORTION OF COSTS ASSOCIATED WITH MOUNTING PATIENT EDUCATION PROGRAMS AND SOME AWARENESS/FUNDRAISING ACTIVITIES, SUCH AS WALK-A-THONS AND GALAS. TO QUALIFY FOR THESE FUNDS, CHAPTERS AND AFFILIATES MUCH SUBMIT A PLAN OF WORK AND A PROPOSED BUDGET TO THE NATIONAL OFFICE OF THE SCLERODERMA FOUNDATION THAT ARE REVIEWED BY A COMMITTEE COMPRISED OF NATIONAL BOARD AND STAFF MEMBERS. FUNDS ARE ALLOCATED ACCORDING TO THE PROPOSED ACTIVITY AND CHAPTER FINANCIAL NEED. 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 FOUNDATIONS WEB SITE AT WWW.SCLERODERMA.ORG/CONFERENCE. FORM 990, PART VI, SECTION B, LINE 11 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. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 5: NET UNREALIZED LOSSES ON INVESTMENTS: -191,140. PRIOR PERIOD ADJUSTMENTS: -98,785. TOTAL TO FORM 990, PART XI, LINE 5: -289,925. AUDIT COMMITEE FORM 99; PART XII, LINE 2C THE ORGANIZATION HAS A COMMITEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THIS PROCESS HAS NOT CHANGEED DURING THE YEAR.