Saras Cure

SARA'S CURE IS THE ONLY NON-PROFIT REPRESENTING CLEAR CELL SARCOMA IN THE USA BUT WE COLLABORATE WITH OTHERS THROUGHOUT THE WORLD TO ENSURE OUR WORK IS EFFICIENT, MEANINGFUL AND IMPACTFUL TO THE CCS FAMILY OF PATIENTS AND OUR CHAMPION CLINICIANS. THROUGHOUT 2021 WE HAVE CONTINUED FUNDING REPURPOSED DRUG TESTING BY WORKING WITH OUR MEDICAL ADVISORS AND THEIR LABS. OUR EXECUTIVE DIRECTOR SERVES ON AN FDA REPURPOSED DRUG TESTING TASK FORCE THAT MEETS MONTHLY. THIS STRATEGIC INVOLVEMENT WITH KEY LEADERS ENSURES THAT THE TIME AND MONEY SPENT IS PUT TO ITS HIGHEST AND BEST USE. IN NOVEMBER 2021 THE FIRST OF ITS KIND PHASE I/II CCS TRIAL OPENED. THIS WAS DONE IN COLLABORATION WITH RAFAEL (NOW CORNERSTONE PHARMA), THE FDA, AND MOST IMPORTANT THE CCS FAMILY OF PATIENTS. WE PARTNERED TO DO THIS BY AGREEING TO PROVIDE FINANCIAL SUPPORT TO PATIENTS IN THE FORM OF TRAVEL REIMBURSEMENT TO HELP PATIENTS GET TO TRIAL LOCATIONS. WE HIRED THE NATIONAL ORGANIZATION OF RARE DISORDERS TO MANAGE THE DISBURSEMENT OF FUNDS TO THE CCS PATIENTS DIRECTLY. WE HAVE HELPED SEVERAL PATIENTS TO DATE. THE CLINICAL TRIAL IS ONGOING. WE CONTINUE TO BUILD THE REGISTRY WITH NORD AND FINALIZED THE DATA DICTIONARY IN DEC 2021. WE CONTINUE TO SUPPORT PATIENTS THROUGH REFERRALS TO SARCOMA CENTERS OF EXCELLENCE AND TO THE DOCTORS THAT CHAMPION THE CCS RESEARCH WHO WORK WITH US TO SUPPORT OUR MISSION. WE ATTENDED THE WORLD ORPHAN DRUG CONGRESS IN AUGUST 2021 AND HAD A CCS FATHER/BOARD MEMBER ATTEND AS WELL AS OUR EXECUTIVE AND SCIENTIFIC DIRECTORS WHO ALSO ATTENDED THE NORD AND CTOS SARCOMA CONFERENCES VIRTUALLY. THE CCS FAMILY OF PATIENTS CONTINUES TO BE THE DRIVING FORCE WITHIN THE ORGANIZATION AND HAS BEEN CRITICAL TO ACTIVELY AND FINANCIALLY SUPPORTING THE WORK WE DO BY PARTICIPATING IN FOCUS GROUPS, PROVIDING PATIENT EXPERIENCE INPUT AND HOSTING FUNDRAISERS IN THEIR COMMUNITIES AROUND THE GLOBE INCLUDING ONLINE EVENTS AND FACEBOOK FUNDRAISERS.