2024-09-03T14:39:45-05:00 2023-12-31 042694095 LITMANGERSON ASSOCIATES LLP 500 W CUMMINGS PARK SUITE 5650 WOBURN MA 01801 990 2023-01-01 043460220 PROGERIA RESEARCH FOUNDATION INC PROG 9785352594 PO BOX 3453 PEABODY MA 019613453 AUDREY GORDON ESQ PRESIDENT, EXECUTIVE DIRECTOR 9785352594 2024-08-28 1 0 MARCI J COHEN P00830439 7815694700 2024-08-28 2023 2024-08-08 14:25:15Z AUDREY GORDON ESQ 200 LAKE STREET PEABODY MA 01960 14874371 0 X WWW.PROGERIARESEARCH.ORG X 1999 MA DISCOVER TREATMENTS & CURE FOR PROGERIA & ITS AGING-RELATED DISORDERS, INCLUDING HEART DISEASE. 10 9 16 60 0 0 2118542 1555410 0 0 -362102 668402 37410 7688 1793850 2231500 293447 302680 0 0 863660 1139332 0 48775 201163 1969659 2439178 3126766 3929965 -1332916 -1698465 47596733 48844685 772349 593519 46824384 48251166 X DISCOVER TREATMENTS & CURE FOR PROGERIA & ITS AGING RELATED DISORDERS, INCLUDING HEART DISEASE. 0 0 302680 302680 RESEARCH GRANTS: PRF HAS AWARDED 85 RESEARCH GRANTS TOTALING $9.3 MILLION THROUGH PEER REVIEW BY OUR VOLUNTEER MEDICAL RESEARCH COMMITTEE. AWARDS OF UP TO $75,000 PER YEAR, FOR UP TO TWO YEARS, HAVE ALLOWED INNOVATIVE NEW RESEARCH IN PROGERIA TO THRIVE. 805514 PROGERIA DRUG TRIAL: THE PROGERIA RESEARCH FOUNDATION AND BOSTON CHILDREN'S HOSPITAL CONTINUE THEIR PARTNERSHIP FOR CONDUCTING CLINICAL DRUG TRIALS FOR CHILDREN WITH PROGERIA.THE CLINICAL TRIAL TEAM: A TEAM OF PROFESSIONALS AT BOSTON CHILDREN'S HOSPITAL AND BRIGHAM & WOMEN'S HOSPITAL IS WORKING WITH CHILDREN WITH PROGERIA FROM AROUND THE GLOBE.(SEE SCHEDULE O FOR CONTINUATION) THE PROGERIA 2-DRUG, PHASE I/II TRIALIN 2015, PRF OBTAINED ALL NECESSARY APPROVALS FOR ITS THIRD TYPE OF CLINICAL TRIAL, WHICH WILL ASSESS A TWO-DRUG COMBINATION OF LONAFARNIB AND EVEROLIMUS. EVEROLIMUS IS A FORM OF THE DRUG RAPAMYCIN, BUT EVEROLIMUS CAN BE MORE EASILY GIVEN TO CHILDREN WITH PROGERIA. EVEROLIMUS TARGETS A DIFFERENT PATHWAY THAN LONAFARNIB, AND THE TRIAL IS DESIGNED TO DETERMINE IF THE COMBINATION PROVIDES A BETTER TREATMENT THAN THE FDA-APPROVED LONAFARNIB ON ITS OWN. THE PROGRESS OF THIS TRIAL IS DETAILED BELOW.IN 2016, PHASE I BEGAN. THE PURPOSE OF A PHASE I TRIAL IS TO DETERMINE THE SAFEST MAXIMUM DOSAGE OF A DRUG. PHASE I WAS COMPLETED IN MID-2017. IN JULY 2017, FOLLOWING THE SUCCESSFUL COMPLETION OF PHASE I, THE CLINICAL TRIAL MOVED ONTO PHASE II. PHASE II OF THE TRIAL TESTS THE EFFECTIVENESS OF THE 2-DRUG COMBINATION. FROM 2016 THROUGH 2020, 60 CHILDREN AND YOUNG ADULTS WITH PROGERIA FROM 26 COUNTRIES SPEAKING 16 LANGUAGES WERE ENROLLED AND TRAVELED TO BOSTON FOR THEIR TRIAL VISITS AT BOSTON CHILDREN'S HOSPITAL, WHERE THEY UNDERWENT A SERIES OF TESTS AND RECEIVED NEW DRUG SUPPLY. IN 2023, THE 20+-MEMBER TRIAL TEAM CONTINUES TO EVALUATE THE 2-DRUG TRIAL DATA TO DETERMINE WHETHER THE 2-DRUG COMBINATION OF EVEROLIMUS PLUS LONAFARNIB IS A MORE EFFECTIVE TREATMENT FOR PROGERIA THAN LONAFARNIB ALONE.GAIN ON SALE OF PRIORITY REVIEW VOUCHERS: IN JANUARY 2021, PURSUANT TO THE COLLABORATION AND SUPPLY AGREEMENT ENTERED INTO BY THE ORGANIZATION, THE ORGANIZATION AND AN UNRELATED PARTY REACHED AN AGREEMENT WITH A THIRD PARTY FOR THE SALE OF U.S. FOOD AND DRUG ADMINISTRATION PRIORITY REVIEW VOUCHER. THE ORGANIZATION'S SHARE OF THE PROCEEDS WAS $47,442,250. THE ORGANIZATION RECOGNIZED A GAIN RELATED TO THIS SALE DURING THE YEAR ENDED DECEMBER 31, 2021 TOTALING $46,493,405, WHICH REPRESENTS THEIR SHARE OF THE PROCEEDS LESS CERTAIN SELLING COSTS OF $948,845. 514497 FUTURE TRIAL EFFORTS: PRF ENGAGES MEMBERS IN THE SCIENTIFIC COMMUNITY WITH EXPERTISE IN VARIOUS DRUGS AND/OR GENETIC THERAPIES FOR THE TREATMENT AND POTENTIAL CURE FOR PROGERIA. THE INVESTIGATION AND COLLABORATIVE EVALUATION OF DRUG THERAPIES IS PURSUED TO IDENTIFY DRUG CANDIDATES/GENETIC THERAPIES THAT CAN LEAD TO FUTURE CLINICAL TRIALS. 1249159 1249159 2871850 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 1 1 0 1 1 0 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 12 0 1 16 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 10 9 1 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 MA NY CA KY MD PA RI OH MS IL NJ MI AL AK AR CO CT FL GA HI KS ME MN NC NH NM NV OK OR SC TN UT VA WA WV WI DC X THE ORGANIZATION 9785352594 PO BOX 3453 PEABODY MA 019613453 SCOTT BERNS DIRECTOR 1.00 X 0 0 0 PAULA KELLY TREASURER/DIRECTOR 1.00 X X 0 0 0 KAREN BALLACK DIRECTOR 1.00 X 0 0 0 SANDRA BRESNICK DIRECTOR 1.00 X 0 0 0 KIM PARATORE CLERK/DIRECTOR 1.00 X X 0 0 0 JOHN MAROZZI DIRECTOR 1.00 X 0 0 0 LARRY MILLS DIRECTOR 1.00 X 0 0 0 LIZA MORRIS DIRECTOR 1.00 X 0 0 0 MATTHEW WINTERS DIRECTOR 1.00 X 0 0 0 MARK KIERAN DIRECTOR 1.00 X 0 0 0 AUDREY GORDON PRESIDENT 40.00 X 235000 0 20427 BARBARA NATKE CHIEF BUSINESS OFFICER 40.00 X 143475 0 755 378475 0 21182 2 0 1 0 AKIN GUMP STAUSS HAUER & FIELD LLP DEPARTMENT 7247-6827 PHILADELPHIA PA 19170 LEGAL 156133 CLB PHARMA CONSULTING LLC 135 AMBERLEIGH DR APT 208 WILMINGTON NC 29411 PHARMACEUTICAL 131963 2 295547 1259863 80358 1555410 1391020 1391020 11881815 12604433 -722618 -722618 -722618 46126 295547 38438 7688 7688 2231500 0 0 676090 302680 302680 242236 181677 36335 24224 799873 504573 210262 85038 17973 7966 4648 5359 79250 55626 14547 9077 5638 5638 129293 111099 18194 52509 52509 48775 48775 220338 220338 170193 8456 161737 98382 46947 26415 25020 31684 31684 55180 11036 44144 6563 657 2236 3670 16585 8000 8585 9766 9766 DRUG TRIAL 805514 805514 FUTURE TRIAL EFFORTS 514497 514497 DIAGNOSTIC TESTING 99002 99002 CELL AND TISSUE BANK 98527 98527 125507 109955 15552 3929965 2871850 856952 201163 7949592 5489686 110283 101787 46854 77854 116768 93527 19192 23241 38574573 42294933 564245 583148 62908 56643 269086 217393 47596733 48844685 506883 376766 265466 216753 772349 593519 X 46824384 48161166 90000 46824384 48251166 47596733 48844685 -1698465 3125247 0 X X 0 1 X 1 0 X 4943791 2086515 1716497 2155952 1563098 12465853 4943791 2086515 1716497 2155952 1563098 12465853 1203678 11262175 102997 123025 930288 1032490 1391020 3579820 46493405 46493405 62539078 0.18010 0.19660 X SUMMARY OF FACTS AND CIRCUMSTANCES WHICH ESTABLISH THAT THE PROGERIA RESEARCH FOUNDATION (PRF) IS IN THE NATURE OF AN ORGANIZATION THAT IS PUBLICLY SUPPORTED.THE MISSION OF THE PROGERIA RESEARCH FOUNDATION (PRF) IS TO FIND TREATMENTS AND THE CURE FOR HUTCHINSON-GILFORD PROGERIA (PROGERIA) SYNDROME, A FATAL, ULTRA-RARE, "RAPID AGING" DISEASE THAT AFFLICTS CHILDREN WHO, WITHOUT TREATMENT, DIE AT AN AVERAGE AGE OF 14 YEARS.PRF HAS SOLICITED CONTRIBUTIONS FROM THE GENERAL PUBLIC FROM ITS INCEPTION IN 1999. PRF HAS REPORTED THE FOLLOWING PERCENTAGES OF PUBLIC SUPPORT FOR THE PAST 9 YEARS:2023 = 18.01%2022 = 19.66%2021 = 19.71%2020 = 74.45%2019 = 75.54%2018 = 86.54%2017 = 94.36%2016 = 94.36%2015 = 90.84%AS ILLUSTRATED ABOVE, PRIOR TO RECEIVING THE EXTRAORDINARY FUNDING IN 2021, PRF'S PERCENTAGE OF PUBLIC SUPPORT SIGNIFICANTLY EXCEEDED 33 1/3%. PRF CONTINUES ALL FUNDRAISING EFFORTS AND EXPECTS TO RETURN TO THE 33 1/3% OF PUBLIC SUPPORT IN THE COMING YEARS.NUMBER OF DONORS FOR THE PAST 9 YEARS:2023 = 2,1712022 = 2,4322021 = 2,4412020 = 2,7862019 = 3,2452018 = 3,6702017 = 3,8592016 = 4,1462015 = 4,097WITH A PROGRAM RATIO THAT IS APPROXIMATELY 80% EACH YEAR, PRF EXPENDS SUBSTANTIALLY ALL OF ITS ANNUAL INCOME FOR ITS EXEMPT PURPOSE AND DEPENDS ON THE FUNDS IT SOLICITS ANNUALLY FROM THE PUBLIC AS WELL AS ITS INVESTMENT INCOME TO SUPPORT THEIR PROGRAMS ON AN ONGOING BASIS. FOR ITS ENTIRE EXISTENCE PRF HAS BEEN RELENTLESSLY FOCUSED ON FINDING TREATMENTS AND THE CURE FOR PROGERIA.IN NOVEMBER 2020, FEDERAL FOOD AND DRUG ADMINISTRATION (FDA) APPROVAL WAS GRANTED FOR LONAFARNIB (ALSO KNOWN AS ZOKINVY) FOR THE TREATMENT OF PROGERIA. THE PRF-FUNDED CLINICAL DRUG TRIAL INVOLVING LONAFARNIB PROVIDED SIGNIFICANT DATA AND ANALYSIS FOR THE NEW DRUG APPLICATION (NDA) THAT LED TO APPROVAL. AS A DIRECT RESULT OF THIS APPROVAL, AND IN ACCORDANCE WITH THE FEDERAL FOOD, DRUG, AND COSMETIC ACT (FD&C ACT), THE FDA AWARDED A PRIORITY REVIEW VOUCHER (PRV) TO THE SPONSOR OF THIS RARE PEDIATRIC DISEASE PRODUCT NDA. IN 2021, PURSUANT TO A COLLABORATION AGREEMENT WITH THE SPONSOR, PRF RECEIVED PROCEEDS ON THE SALE OF THE PRV IN THE AMOUNT OF $46,493,405. IT IS THE INTENTION OF PRF TO USE THIS EXTRAORDINARY FUNDING TO SUPPORT THE NEXT GENERATION OF RESEARCH AND FUTURE DRUG TRIALS THAT WILL LEAD TO MORE ADVANCED TREATMENTS AND, ULTIMATELY, THE CURE FOR PROGERIA.ANNUALLY, PRF SOLICITS CONTRIBUTIONS FROM THE PUBLIC TO SUPPORT ITS ONGOING PROGRAMS AND SERVICES. FUNDRAISING EFFORTS INCLUDE THE FOLLOWING:A. VOLUNTEER-LED EVENTS (GOLF TOURNAMENTS, MOTORCYCLE RIDES, ETC.)B. AN ANNUAL 5K RUN, 2-MILE WALK RACE IN PEABODY, MA WITH 300 PARTICIPANTSC. THE ANNUAL FALMOUTH ROAD RACE, WITH A TEAM OF OVER 20 RUNNERSD. THE ANNUAL BOSTON MARATHON, WITH A 2 - 10 PESON TEAME. BI-ANNUAL GALA & AUCTION, INCLUDING 350 GUESTSF. BI-ANNUAL GOLF TOURNAMENT, WITH NEARLY 100 PLAYERSG. MAILING AND SOCIAL MEDIA CAMPAIGNS: MID-YEAR "ONE POSSIBLE AND END OF YEAR "GIVING TUESDAY", AMONG OTHERS.FUNDS RAISED ARE USED TO SUPPORT THE FOLLOWING PROGRAMS:A. ONGOING CLINICAL DRUG TRIAL AT BOSTON CHILDREN'S HOSPITALB. RESEARCH GRANTS FOR THE ADVANCEMENT OF DISEASE UNDERSTANDING AND TREATMENTC. RESEARCH FOR POTENTIAL FUTURE CLINICAL TRIALSD. THE PRF DIAGNOSTIC TESTING PROGRAME. THE PRF CELL & TISSUE BANKF. THE PRF MEDICAL & RESEARCH DATABASEG. PRF-ORGANIZED SCIENTIFIC CONFERENCESH. WEBSITE FOR PUBLIC AWARENESS AND COMMUNICATIONI. UPDATING AND DISTRIBUTION OF THE PROGERIA HANDBOOK - A TREATMENT GUIDE FOR FAMILIES AND HEALTH CARE PROVIDERS OF THOSE WITH PROGERIAJ. THE PRF INTERNATIONAL PROGERIA REGISTRYK. PRF'S TRANSLATION PROGRAML. DEVELOPMENT OF A BIOMARKER TO MEASURE THE DISEASE-CAUSING TOXIC PROTEIN, PROGERIN PRF HAS A TEN-MEMBER BOARD OF DIRECTORS. BOARD MEMBERS' PROFESSIONAL BACKGROUNDS INCLUDE THE LEGAL, ACCOUNTING, PUBLIC RELATIONS, EVENT PLANNING FIELDS AS WELL AS EXECUTIVE LEADERSHIP AND MANAGEMENT OF FOR-PROFIT BUSINESSES. THE BOARD PROVIDES OVERSIGHT OF OPERATIONS AND PROGRAMS TO ENSURE NO ACTIVITIES ARE FOR THE BENEFIT OF PRIVATE INTERESTS.ON AN ANNUAL BASIS, PRF NORMALLY RECEIVES A SUBSTANTIAL PART OF ITS SUPPORT FROM THE GENERAL PUBLIC, GOVERNMENT GRANTS, AND NET INVESTMENT EARNINGS. THE SUPPORT PRF RECEIVES IS USED TO CONTINUE THE MISSION TO DISCOVER TREATMENTS AND THE CURE FOR PROGERIA. IN 2021, PRF RECEIVED AN EXTRAORDINARY SOURCE OF SUPPORT THAT WAS THE RESULT OF DECADES-LONG RESEARCH AND OPERATION OF PRF'S RESEARCH-RELATED PROGRAMS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 7132 4614 2518 109636 88913 20723 23241 OPERATING LEASE LIABILITY 216753 216753 X 6612738 3125247 1476329 4601576 2011162 220338 220338 2231500 5185956 1476329 1476329 3709627 220338 220338 3929965 PART X, LINE 2: THE ORGANIZATION ACCOUNTS FOR THE UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH THE PROVISIONS OF FASB ASC TOPIC NO. 740 INCOME TAXES (ASC 740), WHICH PRESCRIBES A RECOGNITION THRESHOLD OF MORE LIKELY-THAN-NOT, AND A MEASUREMENT ATTRIBUTE FOR ALL TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN ON A TAX RETURN, IN ORDER FOR THOSE TAX POSITIONS TO BE RECOGNIZED IN THE FINANCIAL STATEMENTS. WHEN NECESSARY, THE ORGANIZATION ACCOUNTS FOR INTEREST AND PENALTIES RELATED TO UNCERTAIN TAX POSITIONS AS PART OF ITS PROVISION FOR INCOME TAXES. THE ORGANIZATION DOES NOT EXPECT THAT UNRECOGNIZED TAX BENEFITS ARISING FROM TAX POSITIONS WILL CHANGE SIGNIFICANTLY WITHIN THE NEXT 12 MONTHS. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM GRANT MAKING 302680 0 0 0 0 0 0 302680 0 302680 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM MEDICAL RESEARCH 302680 0 0 0 0 0 0 0 PART I, LINE 2: PRF USES THE SAME PROCEDURES FOR MONITORING GRANTS OUTSIDE OF THE US THAT IS USED FOR GRANTS MADE WITHIN THE US. THE PROCEDURE IS DESCRIBED IN PART IV OF SCHEDULE I. PART I, LINE 3: METHOD OF ACCOUNTING IS ACCRUAL. X X X 1 SARAH J CONSULTING 4 SAMUEL BIXBY WAY BOXFORD MA 01921 GENERAL FUNDRAISING EFFORTS OF THE ORGANIZATION 0 0 41500 -41500 ROBYN GLAZER MILBURY ESQ 330 ASHLAND ST SEABROOK NH 03874 DONOR RESEARCH, OUTREACH AND THANK YOU CALLS. 0 0 7275 -7275 48775 -48775 AL AK AR CA CO CT DC FL GA HI IL KS KY ME MD MA MI MS NV NH NJ NM NY NC OH OK OR PA RI SC TN UT VA WA WV WI NOW GALA 113864 112182 1682 1400 GOLF TOURNAMENT 65319 41606 23713 19761 2 162490 141759 20731 17277 341673 295547 46126 38438 38438 7688 1 PART I, LINE 2: THE RECIPIENT OF ANY GRANT AWARD FROM PRF MUST USE THE FUNDS FOR THE SPECIFIC PURPOSE FOR WHICH THEY WERE ORIGINALLY INTENDED IN THE GRANT APPLICATION. PRF REQUIRES A DETAILED ACCOUNTING OF ALL FUNDS EXPENDED TO BE SUBMITTED EVERY 12 MONTHS, AND A PROJECT PROGRESS REPORT TO BE SUBMITTED EVERY 12 MONTHS, OR MORE FREQUENTLY AT THE DISCRETION OF PRF WITH THIRTY DAYS NOTICE, AND A FINAL ACCOUNTING AND PROGRESS REPORT WITHIN 60 DAYS OF THE END OF THE PROJECT. ANY FUNDS NOT USED IN THE MANNER SPECIFIED ABOVE MUST BE RETURNED TO PRF, AND ANY BUDGET CHANGE THAT IS GREATER THAN 10% OF THE TOTAL BUDGET AMOUNT MUST BE SUBMITTED IN WRITING FOR APPROVAL BY THE PRF MEDICAL RESEARCH COMMITTEE, SUCH APPROVAL NOT TO BE UNREASONABLY DENIED. PRINCIPAL INVESTIGATORS MAY APPLY FOR AN EXTENSION OF TIME TO USE REMAINING FUNDS AT THE END OF THE GRANT PERIOD. FOR TWO YEAR GRANT AWARDS, FUNDS NOT USED IN THE FIRST YEAR WILL BE AVAILABLE FOR USE IN THE FOLLOWING YEAR IF WRITTEN APPROVAL IS OBTAINED FROM PRF. X 0 0 0 0 0 0 0 0 0 AUDREY GORDON PRESIDENT 191086 0 43914 0 0 0 0 0 20427 0 255427 0 0 0 X 2 80358 MARKET QUOTE 0 1 0 FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES DIAGNOSTIC TESTING: PRF DEVELOPED A DIAGNOSTIC TEST FOR PROGERIA IN THE WAKE OF THE 2003 GENE DISCOVERY SO THAT CHILDREN, THEIR FAMILIES AND MEDICAL CARETAKERS CAN FOR THE FIRST TIME BE GIVEN A DEFINITIVE SCIENTIFIC DIAGNOSIS. THIS CAN TRANSLATE INTO EARLIER DIAGNOSIS, FEWER MISDIAGNOSES AND EARLY MEDICAL INTERVENTION TO ENSURE A BETTER QUALITY OF LIFE FOR THE CHILDREN. MEDICAL & RESEARCH DATABASE: THE DATABASE IS A COLLECTION OF MEDICAL RECORDS OF PROGERIA PATIENTS FROM ALL OVER THE WORLD. THE DATA IS RIGOROUSLY ANALYZED TO DETERMINE THE BEST COURSE OF TREATMENTS TO IMPROVE THE PATIENTS' QUALITY OF LIFE. THIS INFORMATION IS INVALUABLE FOR THE ATTENDING PHYSICIAN TO GUIDE THE FAMILY THROUGH THE BEST COURSE OF ACTION. DATABASE MATERIAL WAS USED TO CREATE PRF'S COMPREHENSIVE HEALTHCARE RECOMMENDATIONS HANDBOOK ON PROGERIA AIMED AT OPTIMIZING QUALITY OF LIFE. THE DATABASE WAS ALSO CRITICAL IN DETERMINING THE PRIMARY CLINICAL OUTCOME PARAMETER FOR THE PROGERIA CLINICAL DRUG TRIALS. WEBSITE/PUBLIC AWARENESS: IN 2019, THE PRF WEBSITE WAS UPDATED. PROGERIARESEARCH.ORG PROVIDES VISITORS WITH ACCESS TO THE LATEST INFORMATION ON PROGERIA RESEARCH, SUPPORT, AND EDUCATION FOR FAMILIES AND CAREGIVERS. IN ADDITION, PRF'S SOCIAL MEDIA PRESENCE AND MEDIA EXPOSURE HELP RAISE AWARENESS OF THE ULTRA-RARE DISEASE GLOBALLY. PRF TRANSLATION PROGRAM: IN TOUCH WITH THE WORLD. WITH A PROMINENT GLOBAL OUTREACH, PRF ELIMINATES BARRIERS OF COMMUNICATION FOR PATIENTS AND THEIR FAMILIES AROUND THE WORLD. THIS INITIATIVE HAS SUCCEEDED IN TRANSLATING PRF PROGRAM AND MEDICAL CARE MATERIALS INTO OVER 38 DIFFERENT LANGUAGES. THE FOUNDATION EDITS AND PUBLISHES THE PROGERIA HANDBOOK, A GUIDE FOR FAMILIES AND HEALTH CARE PROVIDERS OF CHILDREN WITH PROGERIA. IT IS PUBLISHED IN ENGLISH AND SEVERAL OTHER LANGUAGES TO ALLOW ITS USE THROUGHOUT THE WORLD. THE FOUNDATION MAINTAINS AN INTERNATIONAL PROGERIA REGISTRY CONTAINING CENTRALIZED INFORMATION ON CHILDREN AND FAMILIES LIVING WITH PROGERIA. THIS ASSURES RAPID DISTRIBUTION OF ANY NEW INFORMATION THAT MAY BENEFIT THE CHILDREN. PRF ORGANIZES SCIENTIFIC CONFERENCES THAT BRING TOGETHER SCIENTISTS AND CLINICIANS FROM ALL OVER THE WORLD TO SHARE THEIR EXPERTISE AND CUTTING EDGE SCIENTIFIC DATA, AND FOSTER COLLABORATION IN THE FIGHT AGAINST PROGERIA AND OTHER AGING RELATED ILLNESSES. CLINICAL TRIALS 2023: IN 2023, 15 CHILDREN CAME TO BOSTON TO UNDERGO TESTING AND OBTAIN LONAFARNIB FOR THE PROLON 3 (LONAFARNIB EXTENSION) TRIAL, WHICH ALLOWS CHILDREN WHO ARE UNABLE TO OBTAIN LONAFARNIB IN THEIR HOME COUNTRY TO RECEIVE THIS LIFE EXTENDING TREATMENT THROUGH THIS TRIAL, WHILE ALSO GATHERING IMPORTANT DISEASE-RELATED DATA. OF THE 15 CHILDREN THREE WERE NAVE PATIENTS. ONE OF THE CHILDREN WHO CAME TO BOSTON FOR THE PROLON 3 TRIAL ALSO PARTICIPATED IN A FEASIBILITY STUDY, ALONG WITH TWO OTHER CHILDREN. IN JANUARY 2021, PRF REPORTED BREAKTHROUGH FINDINGS IN RNA THERAPEUTICS, WHEREIN THIS THERAPY INHIBITED PRODUCTION OF RNA CODING FOR THE PROGERIA DISEASE-CAUSING PROTEIN, PROGERIN. TYPICALLY, RNA THERAPEUTICS ARE LIQUIDS THAT ARE INJECTED INTRAVENOUSLY (DIRECTLY INTO THE VEIN). HOWEVER, THOSE WITH PROGERIA WOULD NOT BE ABLE TO TOLERATE INTRAVENOUS DELIVERY OF THE REQUIRED DAILY DOSAGE. THUS, PRF DEVELOPED A SUBCUTANEOUS DELIVERY SYSTEM WHEREBY THE LIQUID CAN BE INJECTED WITH A SMALL NEEDLE UNDER THE SKIN. A 6-MONTH STUDY TO DETERMINE THE FEASIBILITY OF THIS DELIVERY APPROACH FOR THOSE WITH PROGERIA BEGAN IN 2023. THE TEAM IS TESTING WHETHER ADMINISTRATION OF A SALINE SOLUTION CAN COMFORTABLY BE INJECTED SUBCUTANEOUSLY. FORM 990, PART VI, SECTION A, LINE 2 AUDREY GORDON WHO IS THE PRESIDENT IS THE SISTER OF LESLIE GORDON WHO IS THE VOLUNTEER MEDICAL DIRECTOR. SCOTT BERNS, WHO IS A DIRECTOR AND HUSBAND OF LESLIE GORDON (VOLUNTEER MEDICAL DIRECTOR), THE BROTHER-IN-LAW OF AUDREY GORDON (PRESIDENT). THE PRESIDENT ALSO SERVES AS PRF'S EXECUTIVE DIRECTOR. HER ROLE AS PRESIDENT, AS WITH ALL CORPORATE PRF OFFICERS, IS A VOLUNTEER POSITION; HER ROLE AS ED IS A PAID STAFF POSITION. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS REVIEWED BY THE PRESIDENT, EXECUTIVE DIRECTOR AND THE TREASURER. FORM 990, PART VI, SECTION B, LINE 12C DISCUSSED AT ANNUAL BOARD MEETINGS. FORM 990, PART VI, SECTION B, LINE 15 THE ED'S SALARY FOR 2023 WAS DETERMINED BY THE INDEPENDENT VOTING MEMBERS AFTER REVIEW OF THE DUTIES PERFORMED AND DATA AS TO COMPARABLE COMPENSATION FOR SIMILARLY QUALIFIED PERSONS. THERE WERE NO OTHER COMPENSATED OFFICERS OR KEY EMPLOYEES IN 2023. FORM 990, PART VI, SECTION C, LINE 19 ALL DOCUMENTS ARE AVAILABLE UPON REQUEST, FINANCIAL STATEMENTS ARE ALSO AVAILABLE ON THE ORGANIZATION WEBSITE. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS NOT CHANGED ITS OVERSIGHT PROCESS OR SELECTION PROCESS DURING THE TAX YEAR.