2024-02-06T10:20:55-05:00 2022-12-31 271340692 HINSKE & CLAREY LLC 109 WAPPOO CREEK DR STE 1A CHARLESTON SC 294122166 990EZ 2022-01-01 825445706 SARA'S CURE CLEAR CELL SARCOMA FOUNDATION SARA 8438646760 783 STILES DRIVE CHARLESTON SC 29412 DAWN JUDD TREASURER 8438646760 2023-02-06 true DAWN JUDD XXX-XX-XXXX false NICHOLE V HINSKE CPA P00535733 8437620452 2024-02-06 2022 2023-04-26 12:10:37Z X WWW.SARASCURE.ORG X X 99906 X 83212 1 16693 16693 99906 37913 1640 632 64944 105129 -5223 96240 91017 X 99408 91017 99408 91017 3168 96240 91017 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. 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. LENNIE WOODS EXECUTIVE DI 000.00 0 KELLY ARGRAVES PHD SCIENTIFIC D 000.00 0 JENAE HELLER BOARD MEMBER 000.00 0 DRU WILLIAMS BOARD MEMBER 000.00 0 DAWN JUDD TREASURER 000.00 0 DENNY WOODS BOARD MEMBER 000.00 0 BRUCE NEWBY BOARD MEMBER 000.00 0 NANETTE DETURK BOARD MEMBER 000.00 0 EVAN BARNES BOARD MEMBER 000.00 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 120700 147312 97218 80588 83212 529030 61000 582 16694 78276 120700 147312 158218 81170 99906 607306 607306 20200 1513 21713 140900 148825 158218 81170 99906 629019 X PART III, LINE 12 OTHER 21,713 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED SPECIAL EVENTS 16693 16693 16693 16693 16693 FORM 990-EZ, PART I, LINE 16 SPECIAL EVENTS OTHER EXPENSES 17,915 TAXES/LICENSES 80 ISLANDS AGAINST CANCER 7,551 EXPENSES ADVERTISING AND WEBSITE 11,794 MARKETING MATERIALS 4,239 BANK & CREDIT CARD FEES 66 SUPPLIES 1,023 TRAVEL 22,172 OTHER EXPENSES 104 TOTAL 64,944 FORM 990-EZ, PART II, LINE 26 CREDIT CARD 3,168 0 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 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. THE ORGANIZTION DID NOT, DURING THE YEAR, RECEIVE ANY FUNDS, DORECTLY OR INDIRECTLY, TO PAY PREMIUMS ON A PERSONAL BENEFIT CONTRACT.