2026-09-22T11:02:31-05:00 2025-12-31 113066459 CERINI & ASSOCIATES LLP 3340 VETERANS MEMORIAL HWY BOHEMIA NY 11716 990 2025-01-01 272417202 EB RESEARCH PARTNERSHIP INC EBRE 6468440902 244 MADISON AVENUE 104 NEW YORK NY 10016 MICHAEL HUND CEO 6468440902 2026-09-22 1 TANIA QUIGLEY P01549343 6315821600 2026-09-22 2025 MICHAEL HUND 244 MADISON AVENUE 104 NEW YORK NY 10016 8885007 0 X WWW.EBRESEARCH.ORG X 2010 NY TO FUND RESEARCH FOR TREATMENTS AND A CURE FOR EPIDERMOLYSIS BULLOSA. 12 12 7 44 0 0 5491713 7189016 0 0 468161 388276 -441638 667201 5518236 8244493 4699297 3728866 0 0 995190 1087847 0 0 950509 1500044 1761146 7194531 6577859 -1676295 1666634 22929761 23641356 6840598 5899467 16089163 17741889 EB RESEARCH PARTNERSHIP IS THE LARGEST ORGANIZAION DEDICATED TO FUNDING RESEARCH FOR TREATMENTS AND A CURE FOR EPIDERMOLYSIS BULLOSA, A GROUP OF DEVASTATING AND LIFE THREATENING GENETIC SKIN DISORDERS THAT AFFECT CHILDREN FROM BIRTH. 0 0 5056072 3728866 GRANTS AND MONEY AWARDED FOR FURTHER RESEARCH. EB RESEARCH PARTNERSHIP FUNDS THE MOST PROMISING, INNOVATIVE AND POTENTIALLY COMMERCIALLY VIABLE TREATMENTS AND POTENTIAL CURES FOR EB. OUR RESEARCH GRANTS INCORPORATE ADVANCES THROUGH THE FIELD OF BIOMEDICINE FOR BETTER TREATMENTS FOR ALL EB SUBTYPES. OUR SCIENTIFIC ADVISORY BOARD REVIEWS ALL GRANT APPLICATIONS SO THAT WE ARE ASSURED THAT GRANTS ARE RELEVANT, INNOVATIVE AND COULD MEANINGFULLY IMPROVE THE QUALITY OF LIFE FOR THOSE LIVING WITH EB. 5056072 1 1 0 0 0 0 0 0 0 0 1 1 0 0 0 1 0 1 0 1 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 16 0 1 7 1 0 1 AS 0 0 0 0 0 0 0 0 0 0 X 12 12 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AR CA FL GA HI IL KS KY MA MD MI MN MS NC NH NJ NM NY OR PA RI SC TN UT VA WI WV X X THE ORGANIZATION 6468440902 244 MADISON AVENUE 104 NEW YORK NY 10016 JILL VEDDER CHAIRPERSON 5.00 X X 0 0 0 ARI DESHE VICE CHAIRPERSON 1.00 X X 0 0 0 EMILY KUBIK TREASURER 1.00 X X 0 0 0 JENNIFER KAUF SECRETARY 1.00 X X 0 0 0 NATHAN BURMEISTER DIRECTOR 1.00 X 0 0 0 DANIEL DESHE DIRECTOR 1.00 X 0 0 0 FAYE DILGEN DIRECTOR 1.00 X 0 0 0 RIC FIRTH DIRECTOR 1.00 X 0 0 0 GREG LICHOLAI DIRECTOR 1.00 X 0 0 0 MICHAEL SACKS DIRECTOR 1.00 X 0 0 0 MARC SEIDNER DIRECTOR 1.00 X 0 0 0 ED VEDDER DIRECTOR 1.00 X 0 0 0 MICHAEL PATRICK HUND CEO 60.00 X 483555 0 0 KATRINA PARKE CHIEF OF STAFF 40.00 X 140234 0 3056 ALLISON BOLSHAGETTIGAN DIRECTOR OF PROGRAMS 40.00 X 147367 0 6678 771156 0 9734 3 0 1 0 DOOR KNOCKER MEDIA INC 280 LADY VALENTINA AVE MAPLE ONTARIO CA L6A 4T2 MEDIA SERVICES 219998 YOUR PART-TIME CONTROLLER LLC 1600 MARKET STREET SUITE 3425 PHILADELPHIA PA 19103 ACCOUNTING SERVICES 187836 KLUNK & MILLAN ADVERTISING DESIGN 1620 POND ROAD ALLENTOWN PA 18104 ADVERTISING SERVICES 187500 DENTONS COHEN & GRIGSBY PC 625 LIBERTY AVE PITTSBURGH PA 15222 LEGAL SERVICES 166930 4 712116 6476900 7189016 403363 403363 477604 492691 -15087 -15087 -15087 0 712116 147823 -147823 -147823 OTHER INCOME 900099 762183 762183 GAIN FROM AFFILIATE 900099 52841 52841 815024 8244493 799937 0 255540 3258179 3258179 470687 470687 482955 217330 96591 169034 497438 181996 84032 231410 44028 19097 9677 15254 63426 25215 11236 26975 162844 131936 30908 225336 225336 181101 148302 25308 7491 496717 267633 288 228796 177186 116246 31217 29723 104464 25805 27098 51561 121678 39545 21294 60839 175221 154101 3858 17262 4435 4435 PAYMENT PROCESSOR FEES 62164 62164 BAD DEBT EXPENSE 50000 50000 6577859 5056072 571278 950509 1272575 930838 4899083 5400011 1595019 1252474 3577000 0 72804 0 59423 7831 46245 51592 9705968 14437900 819932 1197862 941135 370679 22929761 23641356 440010 271513 6346469 5372179 54119 255775 6840598 5899467 X 14295644 16460480 1793519 1281409 16089163 17741889 22929761 23641356 1666634 -13908 0 X 0 1 X 1 0 X 7177252 6106138 7112051 5491713 7041193 32928347 7177252 6106138 7112051 5491713 7041193 32928347 8566653 24361694 9574 283333 552333 468161 374368 1687769 466835 271763 -207123 277543 815024 1624042 36240158 250000 0.67220 0.66950 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 16423 7831 8592 43000 43000 51592 PRIVATELY HELD STOCK 38882 C EQUITY SECURITIES WITHOUT READILY DETERMINABLE FAIR VALUE 14399018 C 14437900 X 8366196 -13908 135611 121703 8244493 0 8244493 6713470 135611 135611 6577859 0 6577859 PART X, LINE 2: MANAGEMENT EVALUATED EBRP'S TAX POSITIONS AND CONCLUDED THAT THE EBRP HAS NOT TAKEN ANY UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH THE PROVISIONS OF FASB ASC NO. 740. 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM PROGRAM SERVICES GRANTS TO RECIPIENTS LOCATED IN THE REGION 375964 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES PROGRAM SERVICES GRANTS TO RECIPIENTS LOCATED IN THE REGION 28023 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, PROGRAM SERVICES GRANTS TO RECIPIENTS LOCATED IN THE REGION 66700 0 0 0 0 0 0 470687 0 470687 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM MULTI-OMICS OF RECESSIVE DYSTROPHIC EB-ASSOCIATED SQUAMOUS CELL CARCINOMA FOR TARGETED ANTI-TUMOR THERAPY; DEVELOPING E-VIVO AND IN-VIVO BASE AND PRIME EDITING STRATEGIES TO TREAT RECESSIVE DYSTROPHIC EB; AND STRATEGIES FOR EFFICIENT AND LONG-TERM ENGRAFTMENT OF MESENCHYMAL STROMAL CELLS FOR THE TREATMENT OF RECESSIVE DYSTROPHIC EB. 282274 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM REPOSITIONNING IN EPIDERMOLYSIS BULLOSA 89100 WIRE 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES EPIDERMOLYSIS BULLOSA CLINICAL RESEARCH CONSORTIUM 14340 WIRE 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES EPIDERMOLYSIS BULLOSA CLINICAL RESEARCH CONSORTIUM 8683 WIRE 0 EAST ASIA AND THE PACIFIC RESEARCH GRANT 66700 WIRE 0 0 0 1 0 0 0 PART I, LINE 2: THE USE OF GRANTS OUTSIDE THE UNITED STATES ARE MONITORED THROUGH A MULTI-TIERED REPORTING PROCEDURE. GRANT AWARDEES ARE REQUIRED TO SUBMIT MILESTONE REPORTS UPON THE COMPLETION OF EACH PROJECT MILESTONE TO DEMONSTRATE PROGRESS AND FLAG ANY BUDGETARY CONCERNS. IN ADDITION, ANNUAL SCIENTIFIC PROGRESS REPORTS ARE REQUIRED EVERY 12 MONTHS TO SUMMARIZE RESEARCH ACTIVITIES AND GRANT EXPENDITURES, UNLESS A RECENT MILESTONE REPORT FULFILLS THE SAME PURPOSE. AT THE CONCLUSION OF EACH GRANT, AWARDEES MUST SUBMIT FINAL REPORTS, INCLUDING A COMPREHENSIVE SCIENTIFIC SUMMARY AND A DETAILED FINANCIAL EXPENDITURE REPORT. BEYOND THESE FORMAL REPORTS, WE EXPECT AWARDEES TO MAINTAIN REGULAR COMMUNICATION WITH OUR TEAM AND MAY ALSO REQUEST AD HOC SUMMARY PROGRESS REPORTS TO MONITOR THE USE OF THE GRANTS MORE CLOSELY OR FREQUENTLY. PLUNGE FOR ELODIE 371870 371870 2811 12185 TRIBECA FILM FETSIVAL 80307 80307 11671 15563 47897 6 259939 259939 20579 12830 24287 712116 712116 32250 31204 84369 147823 -147823 1 ASCENSION SETON MEDICAL CENTER 1201 W 38TH ST AUSTIN TX 78705 741109643 501(C)(3) 8199 0 TO FUND RESEARCH TO FIND A CURE FOR EB CHILDREN'S HOSPITAL OF PHILADELPHIA 3401 CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 62645 0 TO FUND RESEARCH TO FIND A CURE FOR EB CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVE CINCINNATI OH 45229 310833936 501(C)(3) 51814 0 TO FUND RESEARCH TO FIND A CURE FOR EB COLUMBIA UNIVERSITY 615 WEST 131ST STREET MC 8741 NEW YORK NY 10027 135598093 501(C)(3) 205315 0 TO FUND RESEARCH TO FIND A CURE FOR EB EBLIFESTYLE INC 999 WATERSIDE DR SUITE 2525 NORFOLK VA 23510 853215371 501(C)(3) 30000 0 TO FUND RESEARCH TO FIND A CURE FOR EB NORTHWESTERN UNIVERSITY 633 CLARK ST EVANSTON IL 60208 362167817 501(C)(3) 348042 0 TO FUND RESEARCH TO FIND A CURE FOR EB PHOENIX CHILDREN'S HOSPITAL 1919 E THOMAS RD PHOENIX AZ 85016 860422559 501(C)(3) 12500 0 TO FUND RESEARCH TO FIND A CURE FOR EB STANFORD UNIVERSITY 3160 PORTER DRIVE SUITE 100 PALO ALTO CA 94304 941156365 501(C)(3) 475000 0 TO FUND RESEARCH TO FIND A CURE FOR EB THOMAS JEFFERSON UNIVERSITY 601 WALNUT STREET SUITE 925E PHILADELPHIA PA 191063333 231352651 501(C)(3) 145428 0 TO FUND RESEARCH TO FIND A CURE FOR EB UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 952544535 501(C)(3) 11062 0 TO FUND RESEARCH TO FIND A CURE FOR EB UNIVERSITY OF CHICAGO 5801 S ELLIS AVE CHICAGO IL 60637 362177139 501(C)(3) 500000 0 TO FUND RESEARCH TO FIND A CURE FOR EB UNIVERSITY OF COLORADO 13001 E 17TH PL SUITE W5130 AURORA CO 80045 846000555 501(C)(3) 784837 0 TO FUND RESEARCH TO FIND A CURE FOR EB UNIVERSITY OF MINNESOTA 100 CHURCH STREET SE MINNEAPOLIS MN 55455 416007513 501(C)(3) 5111 0 TO FUND RESEARCH TO FIND A CURE FOR EB MAYO CLINIC 200 FIRST STREET ROCHESTER MN 55905 411937751 501(C)(3) 22075 0 TO FUND RESEARCH TO FIND A CURE FOR EB STANFORD UNIVERSITY SCHOOL OF MEDICINE 291 CAMPUS DRIVE LI KA SHING BUILDING STANFORD CA 94305 941156365 501(C)(3) 528661 0 TO FUND RESEARCH TO FIND A CURE FOR EB UNIVERSITY OF FLORIDA PO BOX 115000 GAINESVILLE FL 32611 596002052 501(C)(3) 11658 0 TO FUND RESEARCH TO FIND A CURE FOR EB UNIVERSITY OF SOTH CAROLINA 1600 HAMPTON STREET COLUMBIA SC 29208 576001153 501(C)(3) 27808 0 TO FUND RESEARCH TO FIND A CURE FOR EB 17 PART I, LINE 2: THE USE OF GRANTS INSIDE THE UNITED STATES ARE MONITORED THROUGH A MULTI-TIERED REPORTING PROCEDURE. GRANT AWARDEES ARE REQUIRED TO SUBMIT MILESTONE REPORTS UPON THE COMPLETION OF EACH PROJECT MILESTONE TO DEMONSTRATE PROGRESS AND FLAG ANY BUDGETARY CONCERNS. IN ADDITION, ANNUAL SCIENTIFIC PROGRESS REPORTS ARE REQUIRED EVERY 12 MONTHS TO SUMMARIZE RESEARCH ACTIVITIES AND GRANT EXPENDITURES, UNLESS A RECENT MILESTONE REPORT FULFILLS THE SAME PURPOSE. AT THE CONCLUSION OF EACH GRANT, AWARDEES MUST SUBMIT FINAL REPORTS, INCLUDING A COMPREHENSIVE SCIENTIFIC SUMMARY AND A DETAILED FINANCIAL EXPENDITURE REPORT. BEYOND THESE FORMAL REPORTS, WE EXPECT AWARDEES TO MAINTAIN REGULAR COMMUNICATION WITH OUR TEAM AND MAY ALSO REQUEST AD HOC SUMMARY PROGRESS REPORTS TO MONITOR THE USE OF THE GRANTS MORE CLOSELY OR FREQUENTLY. X X X X 0 0 0 0 0 0 0 1 0 MICHAEL PATRICK HUND CEO 333555 0 150000 0 0 0 0 0 0 0 483555 0 0 0 ALLISON BOLSHAGETTIGAN DIRECTOR OF PROGRAMS 119367 0 28000 0 0 0 0 0 6678 0 154045 0 0 0 PART I, LINE 7 ANNUAL BONUSES ARE PREDICATED UPON PERFORMANCE AND THE AMOUNT IS DETERMINED VIA QUANTITATIVE AND QUALITATIVE ANALYSIS BY THE COMPENSATION COMMITTEE OF THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION A, LINE 2 ED VEDDER AND JILL VEDDER HAVE A FAMILY RELATIONSHIP. ARI DESHE AND DANIEL DESHE HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B THE DRAFT FORM 990 IS REVIEWED BY THE CEO AND THEN PROVIDED ELECTRONICALLY TO THE FULL BOARD OF DIRECTORS AND EXECUTIVE LEADERSHIP FOR REVIEW AND FEEDBACK PRIOR TO FILING WITH THE IRS. ANY QUESTIONS, COMMENTS, OR SUGGESTED REVISIONS RECEIVED ARE CONSIDERED AND INCORPORATED AS APPROPRIATE BEFORE THE RETURN IS FINALIZED AND FILED. FORM 990, PART VI, SECTION B, LINE 12C THE CORPORATION HAS AUTHORIZED THE EXECUTIVE COMMITTEE TO OVERSEE ALL ASPECTS OF THIS POLICY, EXCEPT (I) IF A RELATED PARTY TRANSACTION WOULD OTHERWISE REQUIRE FULL BOARD APPROVAL, THE EXECUTIVE COMMITTEE SHALL SUBMIT THE RELATED PARTY TRANSACTION TO THE BOARD FOR CONSIDERATION, PROVIDING ITS RECOMMENDATION AS TO WHETHER OR NOT TO APPROVE IT, AND (II) RATIFICATION OF A RELATED PARTY TRANSACTION THAT WAS ENTERED INTO WITHOUT REQUISITE APPROVAL SHALL REQUIRE RATIFICATION BY ACTION OF THE BOARD. IF AT ANY TIME ANY COVERED PERSON BELIEVES THAT HE OR SHE MAY HAVE AN INTEREST IN A RELATED PARTY TRANSACTION, SUCH COVERED PERSON SHALL DISCLOSE IN GOOD FAITH THE MATERIAL FACTS REGARDING SUCH INTEREST TO THE EXECUTIVE COMMITTEE. IN ADDITION, AT ANY TIME, THE CORPORATION MAY CIRCULATE A CONFLICT DISCLOSURE QUESTIONNAIRE TO ALL COVERED PERSONS REQUIRING THEM TO DISCLOSE ANY INTERESTS THEY HAVE OR MAY HAVE IN RELATED PARTY TRANACTIONS AND REMINDING THEM TO PROPERLY DISCLOSE ANY THAT MAY EVOLVE IN THE FUTURE. A CONFLICT DISCLOSURE QUESTIONNAIRE MAY ALSO BE FURNISHED TO ANY NEW DIRECTOR PRIOR TO HIS OR HER INITIAL ELECTION AND TO ANY PERSON WHO ASSUMES A POSITION AS AN OFFICE OR MAY BECOME A KEY PERSON OF THE CORPORATION AT THAT TIME. COPIES OF ANY COMPLETED AND SIGNED CONFLICT DISCLOSURE QUESTIONNAIRES SHALL BE SUBMITTED TO THE SECRETARY OF THE BOARD WHO SHALL PROVIDE A COPY OF THEM TO THE CHAIRPERSON OF THE BOARD. WHEN AN ACTUAL OR POSSIBLE CONFLICT OF INTEREST EXISTS, THE MATERIAL FACTS REGARDING THE TRANSACTION OR ARRANGEMENT AND THE INTEREST SHALL BE PRESENTED TO THE EXECUTIVE COMMITTEE FOR A DETERMINATION AS TO WHETHER THE TRANSACTION IS FAIR, REASONABLE AND IN THE CORPORATON'S BEST INTEREST AT THE TIME OF THE DISCUSSION, TAKING INTO ACCOUNT ALL THE RELEVANT CIRCUMSTANCES, INCLUDING THE SPECIFIC RELATED PARTY TRANSACTION AND WHETHER IN THE GOOD FAITH DETERMINATION OF THE EXECUTIVE COMMITTEE THE CORPORATION COULD, WITH REASONABLE EFFORTS, OBTAIN A MORE ADVANTAGEOUS TRANSACTION OR ARRANGEMENT FROM AN ENTITY OR INDIVUDUAL THAT WOULD NOT GIVE RISE TO A CONFLICT. IF A RELATED PARTY TRANSACTION HAS BEEN ENTERED INTO WITHOUT BEING APPROVED AS A RELATED PARTY TRANSACTION, THE CORPORATION MAY, PURSUANT TO THE FOLLOWING REQUIREMENTS, VOTE TO RATIFY SUCH A TRANSACTION. IF SUCH RATIFICATION OCCURS PRIOR TO RECEIPT OF ANY REQUEST FOR INFORMATION BY THE NEW YORK STATE ATTORNEY GENERAL REGARDING THE TRANSACTION, SUCH RATIFICATION SHALL ACT AS A DEFENSE TO AN ACTION BY THE NEW YORK STATE ATTORNEY GENERAL REGARDING SUCH TRANSACTION. FORM 990, PART VI, SECTION B, LINE 15A THE CEO'S COMPENSATION INCLUDES A REVIEW AND APPROVAL BY THE ORGANIZATION'S GOVERNING BODY. COMPARABILITY DATA FOR SIMILARLY QUALIFIED PERSONS IN FUNCTIONALLY COMPARABLE POSITIONS AT SIMILARLY SITUATED ORGANIZATION IS USED TO DETERMINE THE CEO'S COMPENSATION. ANY DECISIONS INVOLVING THE CEO'S COMPENSATION ARRANGEMENT ARE DOCUMENTED. FORM 990, PART VI, SECTION C, LINE 19 ALL ORGANIZATIONAL DOCUMENTS AND FORM 990 ARE AVAILABLE FOR INSPECTION UPON PRIOR WRITTEN REQUEST. FORM 5471 SCHEDULE C THE 2025 AUDIT REFLECTS THE AVERAGE EXCHANGE RATE FOR EACH MONTH, HOWEVER THE 990 USES THE SAME RATE USED FOR CONVERTING AUDS TO USDS FOR THE BALANCE SHEET WHICH IS THE EXCHANGE RATE AS OF DECEMBER 31, 2025. AS A RESULT, US DOLLARS PER THE 990 FOR THE EB RESEARCH AUSTRALIA INCOME STATEMENT DIFFER SLIGHTLY FROM THE AUDITED FINANCIAL STATEMENTS. THE BALANCE SHEET NUMBERS PER THE 990 ARE THE SAME AS THE AUDITED FINANCIAL STATEMENTS. EB RESEARCH PARTNERSHIP (AUSTRALIA) LIMITED 27 BUTLER WAY LEVEL 1 TULLAMARINE VICTORIA AS 3043 FUNDING RESEARCH TO DISCOVER TREATMENTS & CURES FOR EB AS PUBLIC CHARITY EB RESEARCH PARTNERSHIP INC 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0