2024-11-11T13:41:19-05:00 2023-12-31 271340692 HINSKE & CLAREY LLC 109 WAPPOO CREEK DR STE 1A CHARLESTON SC 294122166 990EZ 2023-01-01 825445706 SARA'S CURE CLEAR CELL SARCOMA FOUNDATION SARA 8438646760 783 STILES DRIVE CHARLESTON SC 29412 DAWN JUDD TREASURER 8438646760 2024-11-11 true true NICHOLE V HINSKE CPA P00535733 8437620452 2024-11-11 2023 2024-10-15 13:58:12Z X WWW.SARASCURE.ORG X X 74733 X 59219 9 15505 4371 11134 70362 46559 103 460 49540 96662 -26300 91017 64717 X 91017 64774 91017 64774 57 91017 64717 X THE MISSION OF SARA'S CURE IS TO MAKE CLEAR CELL SARCOMA SURVIVABLE THROUGH EDUCATION AND SCIENTIFIC RESEARCH WHILE ENSURING ALL PATIENTS AND CAREGIVERS IMPACTED HAVE A VOICE AND PLATFORM TO ENACT CHANGE AND STRIVE TOWARDS THE CURE. 2023 HIGHLIGHTS AND PROJECTS CONDUCTED BY THE CCSF LEADERSHIP TEAM AND COMMUNITY: WE STRIVE TO STAY TRUE TO OUR MISSION BY CAREFULLY CONSIDERING EVERYTHING WE DO AND THE IMPACT IT WILL HAVE. WE DO THIS BY ASKING OURSELVES DAILY IF OUR ACTIONS AND ENGAGEMENTS CAN POSITIVELY CONTRIBUTE TO IMPROVING AND EXTENDING OR SAVING A LIFE. JANUARY - FEBRUARY OUR FOUNDER SPENT TWO DAYS AT A CONFERENCE FOR ADVOCACY LEADERS WHO SERVE ON A RESEARCH ADVISORY COUNCIL (RAC) THROUGH SARC TRIALS. THESE MEETINGS ARE CRITICAL TO SHAPE THE SARCOMA TRIAL PROCESS BY SHARING THE CCS PATIENT PERSPECTIVES AND EXPERIENCES. MARCH-APRIL THE APOLLO 613 TRIAL CONCLUDED THE PHASE ONE SAFETY PHASE AND PASSED ALL FDA SAFETY MEASURES. OUR GOAL IN 2024 WILL BE TO FIND FUNDING FOR THE PHASE TWO PORTION. TWO CCSF LEADERS MET WITH DR. ALICE CHEN AND HER TEAM AT NCI TO DISCUSS THE ONGOING PHASE ONE APOLLO 613 TRIAL AS WELL AS RESULTS OF THE ATEZOLIZUMAB TRIAL. WE LEARNED THAT IF TRIAL RESULTS ARE NOT POSITIVE IT IS ALMOST IMPOSSIBLE TO GET THE DATA PUBLISHED. CCSF WAS INVITED TO SPEAK ON A PATIENT ADVOCACY PANEL AT THE CURE DRUG REPURPOSING COLLABORATORS (CDRC) MEETING IN BETHESDA MD. THE MEETING BROUGHT TOGETHER KEY LEADERS IN MEDICINE AND RESEARCH FROM TOP INSTITUTIONS INTERNATIONALLY WITH A GOAL OF FINDING CURRENT DRUGS ON THE MARKET THAT CAN QUICKLY BE IDENTIFIED AND USED TO TREAT THESE RARE DISEASES. WE SPOKE ON THE SARCOMA PANEL ALONGSIDE LEADERS OF THE SARCOMA FOUNDATION OF AMERICA, NCI SARCOMA TRIALS IN PEDIATRICS AND OTHER RARE SARCOMA GROUP LEADERS. MAY - OCTOBER BUILT AND DISPERSED A HIPAA COMPLIANT CCS SURVEY AND ANALYZED THE DATA FOR ACCEPTANCE TO THE INTERNATIONAL SARCOMA CONFERENCE IN DUBLIN IRELAND. NOVEMBER - DECEMBER PRESENTED OUR POSTER WHERE IT WAS WELL RECEIVED BY THE INTERNATIONAL SARCOMA COMMUNITY. WE HELD OUR FIRST EUROPEAN PATIENT MEET UP WHILE AT THE CONFERENCE AND HAD FIVE CCS FAMILIES ATTEND ALONG WITH SCIENTIST FROM LONDON WORKING ON INNOVATIVE CCS RESEARCH FUNDED BY THE ONLY OTHER CCS FOCUSED ORGANIZATION, THE SHOWLER FOUNDATION. WE CONNECTED WITH THIS ORGANIZATION TO ESTABLISH AN ONGOING RELATIONSHIP FOR COLLABORATION TO ENSURE ALL RESEARCH AND DATA IS NOT DUPLICATED AND SHARED GLOBALLY SO WE OUR REACH IS EVEN GREATER TO HELP FAMILIES AFFECTED BY CCS. WE CONTINUED OUR DOD GRANT PARTNERSHIP WITH THE RARE CANCER RESEARCH FOUNDATION (RCRF) AND PATTERN.ORG FOR COLLECTING CCS SURGICAL TISSUE FOR RESEARCH. WE HAVE 3 PATIENTS TISSUE DONATIONS AS OF THIS WRITING. 65957 65957 LENNIE WOODS EXECUTIVE DI 40.00 32000 DENNY WOODS BOARD MEMBER 1.00 0 KELLY ARGRAVES PHD SCIENTIFIC D 1.00 0 NANETTE DETURK BOARD MEMBER 1.00 0 DRU WILLIAMS BOARD MEMBER 1.00 0 DAWN JUDD TREASURER 1.00 0 JENAE HELLER BOARD MEMBER 1.00 0 BRUCE NEWBY BOARD MEMBER 1.00 0 EVAN BARNES BOARD MEMBER 1.00 0 false false false false false false false false false SC DAWN JUDD 1166 MARINER DRIVE CHARLESTON SC 29412 8438646760 false false false false false false false false false false false NONE NONE true X 147312 97218 80588 83212 59219 467549 61000 582 16694 15514 93790 147312 158218 81170 99906 74733 561339 561339 1513 1513 148825 158218 81170 99906 74733 562852 X PART III, LINE 12 OTHER 1,513 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED BO'S ROAST 15505 15505 260 2000 2111 15505 15505 260 2000 2111 4371 11134 FORM 990-EZ, PART I, LINE 16 EXPENSES ADVERTISING AND WEBSITE 6,895 MARKETING MATERIALS 11,422 BANK & CREDIT CARD FEES 127 SUPPLIES 1,865 TRAVEL 22,984 CONFERENCES/MEETINGS 2,550 REPURPOSE DRUG TESTING 2,219 TRIALS/RESERACH 1,426 LICENSE 52 TOTAL 49,540 FORM 990-EZ, PART II, LINE 26 CREDIT CARD 0 57 FORM 990-EZ, PART III THE MISSION OF SARA'S CURE IS TO MAKE CLEAR CELL SARCOMA SURVIVABLE THROUGH EDUCATION AND SCIENTIFIC RESEARCH WHILE ENSURING ALL PATIENTS AND CAREGIVERS IMPACTED HAVE A VOICE AND PLATFORM TO ENACT CHANGE AND STRIVE TOWARDS THE CURE. FORM 990-EZ, PART III, LINE 28 2023 HIGHLIGHTS AND PROJECTS CONDUCTED BY THE CCSF LEADERSHIP TEAM AND COMMUNITY: WE STRIVE TO STAY TRUE TO OUR MISSION BY CAREFULLY CONSIDERING EVERYTHING WE DO AND THE IMPACT IT WILL HAVE. WE DO THIS BY ASKING OURSELVES DAILY IF OUR ACTIONS AND ENGAGEMENTS CAN POSITIVELY CONTRIBUTE TO IMPROVING AND EXTENDING OR SAVING A LIFE. JANUARY - FEBRUARY OUR FOUNDER SPENT TWO DAYS AT A CONFERENCE FOR ADVOCACY LEADERS WHO SERVE ON A RESEARCH ADVISORY COUNCIL (RAC) THROUGH SARC TRIALS. THESE MEETINGS ARE CRITICAL TO SHAPE THE SARCOMA TRIAL PROCESS BY SHARING THE CCS PATIENT PERSPECTIVES AND EXPERIENCES. MARCH-APRIL THE APOLLO 613 TRIAL CONCLUDED THE PHASE ONE SAFETY PHASE AND PASSED ALL FDA SAFETY MEASURES. OUR GOAL IN 2024 WILL BE TO FIND FUNDING FOR THE PHASE TWO PORTION. TWO CCSF LEADERS MET WITH DR. ALICE CHEN AND HER TEAM AT NCI TO DISCUSS THE ONGOING PHASE ONE APOLLO 613 TRIAL AS WELL AS RESULTS OF THE ATEZOLIZUMAB TRIAL. WE LEARNED THAT IF TRIAL RESULTS ARE NOT POSITIVE IT IS ALMOST IMPOSSIBLE TO GET THE DATA PUBLISHED. CCSF WAS INVITED TO SPEAK ON A PATIENT ADVOCACY PANEL AT THE CURE DRUG REPURPOSING COLLABORATORS (CDRC) MEETING IN BETHESDA MD. THE MEETING BROUGHT TOGETHER KEY LEADERS IN MEDICINE AND RESEARCH FROM TOP INSTITUTIONS INTERNATIONALLY WITH A GOAL OF FINDING CURRENT DRUGS ON THE MARKET THAT CAN QUICKLY BE IDENTIFIED AND USED TO TREAT THESE RARE DISEASES. WE SPOKE ON THE SARCOMA PANEL ALONGSIDE LEADERS OF THE SARCOMA FOUNDATION OF AMERICA, NCI SARCOMA TRIALS IN PEDIATRICS AND OTHER RARE SARCOMA GROUP LEADERS. MAY - OCTOBER BUILT AND DISPERSED A HIPAA COMPLIANT CCS SURVEY AND ANALYZED THE DATA FOR ACCEPTANCE TO THE INTERNATIONAL SARCOMA CONFERENCE IN DUBLIN IRELAND. NOVEMBER - DECEMBER PRESENTED OUR POSTER WHERE IT WAS WELL RECEIVED BY THE INTERNATIONAL SARCOMA COMMUNITY. WE HELD OUR FIRST EUROPEAN PATIENT MEET UP WHILE AT THE CONFERENCE AND HAD FIVE CCS FAMILIES ATTEND ALONG WITH SCIENTIST FROM LONDON WORKING ON INNOVATIVE CCS RESEARCH FUNDED BY THE ONLY OTHER CCS FOCUSED ORGANIZATION, THE SHOWLER FOUNDATION. WE CONNECTED WITH THIS ORGANIZATION TO ESTABLISH AN ONGOING RELATIONSHIP FOR COLLABORATION TO ENSURE ALL RESEARCH AND DATA IS NOT DUPLICATED AND SHARED GLOBALLY SO WE OUR REACH IS EVEN GREATER TO HELP FAMILIES AFFECTED BY CCS. WE CONTINUED OUR DOD GRANT PARTNERSHIP WITH THE RARE CANCER RESEARCH FOUNDATION (RCRF) AND PATTERN.ORG FOR COLLECTING CCS SURGICAL TISSUE FOR RESEARCH. WE HAVE 3 PATIENTS TISSUE DONATIONS AS OF THIS WRITING. THE ORGANIZTION DID NOT, DURING THE YEAR, RECEIVE ANY FUNDS, DORECTLY OR INDIRECTLY, TO PAY PREMIUMS ON A PERSONAL BENEFIT CONTRACT.