National Scleroderma Foundation

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.

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.

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.