SCLERODERMA FOUNDATION INC
300 ROSEWOOD DRIVE NO 105, DANVERS, MA 01923 www.scleroderma.org

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Organizations Filed Purposes: SCLERODERMA FOUNDATION'S MISSION IS THREEFOLD: 1) SUPPORT TO HELP PATIENTS AND THEIR FAMILIES COPE WITH SCLERODERMA THROUGH MUTUAL SUPPORT PROGRAMS, PEER COUNSELING, PHYSICIAN REFERRALS, AND EDUCATIONAL INFORMATION. 2) EDUCATION TO PROMOTE PUBLIC AWARENESS AND EDUCATION THROUGH PATIENT AND HEALTH PROFESSIONAL SEMINARS, LITERATURE, AND PUBLICITY CAMPAIGNS. AND 3) RESEARCH TO STIMULATE AND SUPPORT RESEARCH TO IMPROVE TREATMENTS AND, ULTIMATELY, FIND THE CAUSE OF AND CURE FOR SCLERODERMA.

EDUCATION AND SUPPORT:THE SCLERODERMA FOUNDATION AND ITS CHAPTERS OFFER EDUCATIONAL PROGRAMS TO INDIVIDUALS WHO HAVE SCLERODERMA AND TO THEIR CAREGIVERS AND FAMILY MEMBERS WHO ARE ALSO IMPACTED BY THE LIFE CHANGES CAUSED BY THE DISEASE. THE FOUNDATION'S ANNUAL "NATIONAL PATIENT EDUCATION CONFERENCE", IN RECENT YEARS HAS BEEN ATTENDED BY OVER 670 INDIVIDUALS. THE PROGRAM INCLUDED ABOUT 45 WORKSHOPS AND SEMINARS PRESENTED 57 EXPERT SPEAKERS IN SYMPTOM MANAGEMENT, RESEARCH DATA, AND COPING STRATEGIES. THE CONFERENCE ALSO INCLUDED A "KIDS & TEENS" PROGRAM THAT EMPHASIZED JUVENILE SCLERODERMA, WHICH PROVIDED CHILDREN DIAGNOSED WITH SCLERODERMA AGE-APPROPRIATE LEARNING ABOUT THEIR DISEASE, AT THE SAME TIME IT HELPED PARENTS UNDERSTAND THE ILLNESS. SIBLINGS OF CHILDREN WITH SCLERODERMA AND CHILDREN OF ADULTS WITH SCLERODERMA ALSO BENEFITED FROM THE PROGRAM. ADDITIONALLY, CHAPTERS IN THE FOUNDATION OFFERED THEIR OWN LOCAL EDUCATIONAL PROGRAMMING AT DIFFERENT TIMES OF THE YEAR TO PROVIDE THE SAME RANGE OF INFORMATION ON A SMALLER SCALE CLOSER TO HOME. THESE CHAPTER EVENTS ARE TYPICALLY ONE DAY AFFAIRS AND ARE ATTENDED BY THOSE WHO ARE UNABLE TO ATTEND THE NATIONAL CONFERENCE. SCHOLARSHIPS ARE OFFERED TO DEFRAY THE COST OF THE NATIONAL CONFERENCE BASE ON AN APPLICATION PROCESS.THE FOUNDATION AND ITS CHAPTERS MAINTAIN A NETWORK OF SUPPORT GROUPS AROUND THE COUNTRY. LED BY VOLUNTEERS WHO RECEIVE RESOURCES AND TRAINING FROM THE FOUNDATION, SUPPORT GROUPS ARE FOR MANY THE FRONT LINE OF COPING WITH THE EMOTIONAL IMPACT OF THE DISEASE. CHAPTERS MANAGE GROUPS THAT OCCUR WITHIN THEIR TERRITORY, AND THE NATIONAL OFFICE MANAGES GROUPS THAT FALL OUTSIDE OF ANY CHAPTER BOUNDARY. THERE ARE APPROXIMATELY 150 SUPPORT GROUPS IN TOTAL. THE NUMBER FLUXUATES AS VOLUNTEER LEADERS START UP NEW GROUPS OR AS THEY DROP OFF. CHAPTERS AND NATIONAL STAFF WORK TO DEVELOP REPLACEMENT GROUP LEADERS. MEETING DATES, TIMES, AND LOCATIONS, PLUS GROUP LEADER CONTACTS ARE POSTED ON THE FOUNDATION WEBSITE, SCLERODERMA.ORG, TO FACILITATE ACCESS TO THE GROUPS. FROM TIME TO TIME, SEVERAL CHAPTERS OFFER TELEPHONE SUPPORT GROUPS TO ENABLE CONTACT WITHOUT THE NEED TO TRAVEL, EVEN LOCALLY. ADDITIONALLY, THE FOUNDATION MAINTAINS AN ONLINE FORUM CALLED INSPIRE.COM SO THAT INDIVIDUALS CAN SHARE PERSONAL EXPERIENCES ABOUT THEIR DISEASE. THIS ONLINE COMMUNITY IS PROMOTED VIA THE FOUNDATION'S WEBSITE, THROUGH ITS SOCIAL MEDIA PLATFORMS, AND PRINT PUBLICATIONS.

RESEARCH:THE SCLERODERMA FOUNDATION FUNDED PEER-REVIEWED, SCLERODERMA RESEARCH PROJECTS. EACH AWARD WAS $150,000 SPREAD OVER MULTIPLE YEARS. FOUR WERE TWO-YEAR ESTABLISHED INVESTIGATOR AWARDS, AND THREE WERE THREE-YEAR NEW INVESTIGATOR AWARDS. GRANTS ARE AWARDED FOLLOWING A PEER-REVIEW PROCESS THAT UTILIZES THE SAME SCORING METHOD FOLLOWED BY THE NATIONAL INSTITUTE OF HEALTH. THE PEER REVIEW PANEL IS COMPRISED OF INDEPENDENT SCIENTISTS, WHO DO NOT RECEIVE FUNDING FROM THE FOUNDATION. THEY REVIEW THE GRANT SUBMISSIONS INDEPENDENTLY AND THEN MEET TO DISCUSS AND DETERMINE FINAL SCORES. 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, SUCH AS THE NATIONAL INSTITUTES OF HEALTH. ESTABLISHED INVESTIGATOR AWARDS ARE GIVEN TO INVESTIGATORS WHO HAVE YEARS OF EXPERIENCE, BUT ARE EXPLORING INNOVATIVE IDEAS THAT WOULD FALL OUTSIDE MAINSTREAM FUNDING SOURCES. FOUNDATION MONIES ARE PROVIDED TO DEMONSTRATE THE VIABILITY OF THEIR CONCEPT AND POSITION THEM FOR MORE SUBSTANTIAL GRANTS FROM LARGER FUNDING INSTITUTIONS.

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