2024-05-15T10:36:58-05:00 2023-12-31 351307701 KRUGGEL LAWTON & COMPANY LLC 210 S MICHIGAN STREET SUITE 200 SOUTH BEND IN 46601 990 2023-01-01 382813140 EHLERS-DANLOS SOCIETY EHLE 4106707577 447 BROADWAY 2ND FLOOR 670 NEW YORK NY 10013 ROBERT RUBIN TREASURER 4106707577 2024-05-13 1 ROBERT RUBIN 999009999 0 MARGENE ZINK P01222961 5742894011 2024-05-13 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z LARA BLOOM 447 BROADWAY 2ND FLOOR 670 NEW YORK NY 10013 9777550 0 X WWW.EHLERS-DANLOS.COM X 1988 MI THE EHLERS-DANLOS SOCIETY IS DEDICATED TO ADVANCING AND ACCELERATING RESEARCH AND EDUCATION IN EHLERS-DANLOS SYNDROMES (EDS) AND HYPERMOBILITY SPECTRUM DISORDERS (HSD). WE SUPPORT THE DEVELOPMENT OF EFFECTIVE AND EQUITABLE EDS AND HSD THERAPIES AND WORK COLLABORATIVELY TO IMPROVE THE LIVES OF INDIVIDUALS AFFECTED BY EDS AND HSD.WE PROVIDE GLOBAL LEARNING CONFERENCES, COLLABORATIVE RESEARCH, EDUCATION INITIATIVES, AWARENESS CAMPAIGNS, ADVOCACY, COMMUNITY-BUILDING, AND CARE FOR THE EDS AND HSD POPULATION. 13 13 16 5 9334 6115 3933892 9359005 572083 395170 0 543 8553 9335 4514528 9764053 1897426 217511 0 0 1052887 1281230 0 0 262757 1134785 3686830 4085098 5185571 429430 4578482 3182723 8734113 540911 1513855 2641812 7220258 X THE EHLERS-DANLOS SOCIETY IS A GLOBAL ORGANIZATION DEDICATED TO ADVANCING AND ACCELERATING RESEARCH AND EDUCATION IN EHLERS-DANLOS SYNDROMES (EDS) AND HYPERMOBILITY SPECTRUM DISORDERS (HSD). WE SUPPORT THE DEVELOPMENT OF EFFECTIVE AND EQUITABLE EDS AND HSD THERAPIES AND WORK COLLABORATIVELY TO IMPROVE THE LIVES OF INDIVIDUALS AFFECTED BY EDS AND HSD. 0 0 2435236 BRINGING TOGETHER MEDICAL PROFESSIONALS FROM ALL OVER THE WORLD TO WORK ON GROUND-BREAKING MANAGEMENT AND CARE. AT THE CORE OF THIS RESEARCH IS THE GLOBAL EDS AND HSD REGISTRY. THE REGISTRY WILL ALSO PROVIDE NEW OPPORTUNITIES FOR RESEARCH, INCLUDING IDENTIFYING LINKS BETWEEN EDS AND HSD AND OTHER CONDITIONS. THE EHLERS-DANLOS SOCIETY HAS AWARDED FUNDING FOR RESEARCH GRANTS IN TO THE EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS. OUR GOAL IS TO ENSURE CONSISTENT AND GROUNDBREAKING RESEARCH INTO THESE CONDITIONS TO HELP INDIVIDUALS LIVING WITH THESE CONDITIONS, WORLDWIDE. 549021 0 395171 THE EHLERS-DANLOS SOCIETY ORGANIZES MEDICAL AND SCIENTIFIC SYMPOSIUMS TO EXAMINE THE LATEST RESEARCH AND UPDATE THE DIAGNOSTIC CRITERIA AND GUIDELINES FOR MANAGEMENT AND CARE. WE WORK WITH THE COMORBIDITY COALITION AND THE INTERNATIONAL CONSORTIUM ON DEVELOPED CLINICAL CARE PATHWAYS FOR MANAGEMENT AND DIAGNOSIS. EVENTS FOR HEALTH PROFESSIONALS ARE HELD GLOBALLY AND ARE CME-ACCREDITED. ANNUAL GLOBAL LEARNING CONFERENCES BRING TOGETHER AND UNITE OUR COMMUNITY, PROVIDING OPPORTUNITIES TO INTERACT, FIND SUPPORT, AND LEARN MANAGEMENT STRATEGIES AND INFORMATION FROM WORLD-LEADING EXPERTS IN EDS AND HSD. 1366806 217511 1366806 217511 4351063 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 1 0 1 1 1 1 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 16 1 1 1 1 UK 0 0 0 0 0 0 0 0 0 0 X 13 13 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 0 1 1 0 AL AK CA CO CT FL GA HI KS KY ME MD MA MN MS NV NH NM ND OH OK OR PA RI SC TN UT VA WA WV WI X ERIC ALLEY 9187980312 25354 S 4130 RD CLAREMORE OK 74019 LARA BLOOM CEO 50.00 X X 0 165563 0 ELIZABETH HERNDON DIRECTOR 1.00 X 0 0 0 MELANIE MACLEOD DIRECTOR 1.00 X 0 0 0 EDWARD FITZGERALD III EMERITUS BOARD MEMBER 1.00 X 0 0 0 WOODROW GANDY DIRECTOR 1.00 X 0 0 0 SUSAN HASKEL DIRECTOR 1.00 X 0 0 0 AMY ROCHLIN DIRECTOR 1.00 X 0 0 0 MITUL MODI DIRECTOR 1.00 X 0 0 0 MICHELLE JALALI DIRECTOR 1.00 X 0 0 0 CLAIR FRANCOMANO DIRECTOR 1.00 X 0 0 0 FRANCES FITZGERALD DIRECTOR 1.00 X 0 0 0 ANOUSHE HUSAIN DIRECTOR 1.00 X 0 0 0 AISLING GREEN DIRECTOR 1.00 X 0 0 0 AKILAH CADET DIRECTOR 1.00 X 0 0 0 ROBERT RUBIN TREASURER 5.00 X X 0 0 0 JOHN ZONARICH SECRETARY 5.00 X X 0 0 0 SUSAN HAWKINS PRESIDENT 5.00 X X 0 0 0 ERIC ALLEY FINANCE DIRECTOR 40.00 X 77759 0 0 77759 165563 0 0 0 1 0 METABOLON 617 DAVIS DR SUITE 100 MORRISVILLE NC 27560 ANALYSIS OF BLOOD SAMPLES TO RESEARCH EH 1145900 OLINK 130 TURNER ST BUILDING 2 SUITE 23 WALTHAM MA 02453 ANALYSIS OF BLOOD SAMPLES TO RESEARCH EH 542784 SOMALOGIC 2945 WILDERNESS PL BOULDER CO 80301 ANALYSIS OF BLOOD SAMPLES TO RESEARCH EH 478286 0 9359005 9359005 CONFERENCE 611710 395170 395170 395170 543 543 22831 13497 9334 9334 MISCELLANEOUS REVENUE 541900 1 1 1 9764053 395171 9334 543 X 178436 178436 318 318 38757 38757 243322 175043 42435 25844 968285 716879 101366 150040 4512 4512 16999 5909 4311 6779 48112 26616 7819 13677 261743 220795 27376 13572 16399 16399 51356 51356 2514905 2498484 16421 9870 9870 52264 24326 15092 12846 60153 8949 50261 943 1412 1412 228300 124973 99610 3717 320721 320721 15631 15631 18083 18083 MISCELLANEOUS EXPENSES 88291 88291 DUES AND SUBSCRIPTIONS 47702 987 27775 18940 5185571 4351063 571751 262757 2392120 2549225 596048 272325 4113723 379862 1233052 96116 141958 9800 3470 47 6330 1730 7566 40523 86211 3182723 8734113 333003 1365051 185941 95238 21967 53566 540911 1513855 X 595865 462641 2045947 6757617 2641812 7220258 3182723 8734113 4578482 -36 0 X 0 1 X 1 0 X 2867045 2154718 4066340 3933892 9359005 22381000 2867045 2154718 4066340 3933892 9359005 22381000 6463518 15917482 132 110 58 543 843 1 1 22381844 1641277 0.71120 0.59950 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 9800 3470 6330 6330 X PART X, LINE 2: THE SOCIETY IS A NOT-FOR-PROFIT ORGANIZATION THAT IS EXEMPT FROM INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. THE INTERNAL REVENUE SERVICE (IRS) HAS DETERMINED THAT THE SOCIETY IS NOT A PRIVATE FOUNDATION WITHIN THE MEANING OF SECTION 509(A). THE INCOME TAXES TOPIC, FASB ASC 740, CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES RECOGNIZED IN AN ENTITY'S FINANCIAL STATEMENTS. ASC 740 REQUIRES AN ENTITY TO DISCLOSE THE NATURE OF UNCERTAIN TAX POSITIONS TAKEN, IF ANY, WHEN FILING ITS INCOME TAX RETURN UTILIZING A TWO-STEP PROCESS TO RECOGNIZE AND MEASURE ANY UNCERTAIN TAX POSITIONS TAKEN. THE ENTITY RECOGNIZES A TAX BENEFIT ONLY IF IT IS MORE LIKELY THAN NOT THE POSITION WOULD BE SUSTAINED IN A TAX EXAMINATION, WITH A TAX EXAMINATION BEING PRESUMED TO OCCUR. NO TAX BENEFIT WILL BE RECORDED ON TAX POSITIONS NOT MEETING THE MORE LIKELY THAN NOT TEST. INTEREST AND PENALTIES ACCRUED OR INCURRED, IF ANY, AS A RESULT OF APPLYING ASC 740 WILL BE RECORDED TO INTEREST EXPENSE AND OTHER EXPENSE, RESPECTIVELY. BASED ON ITS EVALUATION, THE SOCIETY HAS CONCLUDED THAT THERE ARE NO UNCERTAIN TAX POSITIONS REQUIRING RECOGNITION IN ITS FINANCIAL STATEMENTS. THE SOCIETY'S EVALUATION WAS PERFORMED FOR ALL FEDERAL AND STATE TAX PERIODS STILL SUBJECT TO EXAMINATION. THE SOCIETY'S 2020 THROUGH 2022 FEDERAL AND STATE EXEMPT ORGANIZATION RETURNS REMAIN SUBJECT TO EXAMINATION BY THE IRS AND STATE TAXING AUTHORITIES. THE SOCIETY IS CURRENTLY REGISTERED OR HAS HISTORICALLY BEEN REGISTERED IN A NUMBER OF STATES AND JURISDICTIONS WITH VARIOUS REPORTING REQUIREMENTS. THE SOCIETY IS IN THE PROCESS OF BRINGING REGISTRATIONS UP TO DATE WITH THE REQUIRED INFORMATION. THE STATES AND JURISDICTIONS MAY IMPOSE LATE FEES, FILING FEES, OR PENALTIES. ANY SUCH ASSESSMENTS ARE UNABLE TO BE ESTIMATED AT THIS TIME. 0 UNITED KINGDOM 0 14 PROGRAM SERVICES GENERAL 1074187 0 14 0 0 0 14 1074187 0 1074187 NETHERLANDS OPEN ACCESS GRANT 5532 WIRE 0 0 1 RESEARCH GRANT SPRING MICROGRANT 1 5000 WIRE 0 0 0 0 0 0 PART I, LINE 2: GRANTEE WILL PROVIDE TO THE EHLERS-DANLOS SOCIETY AN ANNUAL REPORT AND AUDITED FINANCIAL STATEMENTS AT THE END OF GRANTEE'S FISCAL YEAR. THE GRANTEE AGREES TO PROVIDE A WRITTEN ANNUAL UPDATE BY DECEMBER 31ST EACH YEAR, FOR THE DURATION OF FUNDING SUPPORT FOR OUR WEBSITE. GRANTEE WILL PROVIDE PROMPTLY SUCH ADDITIONAL INFORMATION AND DOCUMENTS AS THE EHLERS-DANLOS SOCIETY MAY REQUEST AND WILL ALLOW THE EHLERS-DANLOS SOCIETY AND ITS REPRESENTATIVES TO HAVE REASONABLE ACCESS DURING REGULAR BUSINESS HOURS TO FILES, RECORDS, ACCOUNTS OR PERSONNEL THAT ARE ASSOCIATED WITH THIS GRANT, FOR THE PURPOSE OF MAKING SUCH FINANCIAL REVIEWS, VERIFICATIONS OR PROGRAM EVALUATIONS AS MAY BE DEEMED NECESSARY BY THE EHLERS-DANLOS SOCIETY. GRANTEE WILL ALLOW THE EHLERS-DANLOS SOCIETY TO REVIEW AND APPROVE THE TEXT OF ANY PROPOSED PUBLICITY CONCERNING THIS GRANT PRIOR TO ITS RELEASE. IF THIS GRANT IS TO BE USED FOR A FILM, VIDEO, BOOK, OR OTHER SUCH PROJECT, THE EHLERS-DANLOS SOCIETY RESERVES THE RIGHT TO REQUEST A SCREENING OR PREVIEW OF THE PRODUCT, DURING THE FINAL PRODUCTION STAGES, BEFORE DECIDING WHETHER OR NOT TO BE CREDITED AS A FOUNDER OF THE PRODUCT. PART I, LINE 3: TRACKED IN QUICKBOOKS BY ERIC ALLEY, FINANCE DIRECTOR 1 CARLE FOUNDATION HOSPITAL 611 W PARK ST URBANA IL 61801 371119538 501(C)(3) 0 58436 HEDGE ANALYSIS GRANT MEDICAL UNIVERSITY OF SOUTH CAROLINA 171 ASHLEY AVE SUITE 419 CHARLESTON SC 29425 576028985 501(C)(3) 0 105000 RESEARCH GRANT 3 PART I, LINE 2: GRANTS ARE AWARDED BY THE BOARD OF DIRECTORS BASED ON APPLICATIONS FOR SPECIFIC RESEARCH FUNDING. AS PART OF THE GRANT AGREEMENT, RECIPIENTS ARE REQUIRED TO SHARE THEIR RESULTS. X 0 0 0 0 0 0 0 0 0 LARA BLOOM CEO 0 153440 0 8630 0 3493 0 0 0 0 0 165563 0 0 PART I, LINE 3 LARA BLOOM'S COMPENSATION IS ESTABLISHED BY APPROVAL FROM THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION A, LINE 2 WARD FITZGERALD, WHO MAINTAINS THE BOARD POSITION OF PRESIDENT EMERITUS, A NON VOTING POSITION, IS THE FATHER OF BOARD MEMBER FRANCES FITZGERALD. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS PROVIDED TO THE BOARD OF DIRECTORS FOR REVIEW AND APPROVAL PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS ARE REQUIRED TO SIGN THE CONFLICT OF INTEREST POLICY ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 LARA BLOOM'S COMPENSATION IS APPROVED BY THE BOARD OF DIRECTORS AND REVIEWED ANNUALLY. FORM 990, PART VI, SECTION C, LINE 18 AVAILABLE UPON REQUEST FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS ARE AVAILABLE TO PUBLIC UPON WRITTEN REQUEST TO ORGANIZATION'S EXECUTIVE DIRECTOR. FORM 990, PART VI, LINE 2 WARD FITZGERALD, WHO MAINTAINS THE BOARD POSITION OF PRESIDENT EMERITUS, A NON VOTING POSITION IS THE FATHER OF BOARD MEMBER FRANCES FITZGERALD. FORM 990, PART IX, LINE 11G TRANSLATION SERVICES: PROGRAM SERVICE EXPENSES 2,647. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 2,647. CME ACCREDITATION FEES: PROGRAM SERVICE EXPENSES 34,250. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 34,250. OTHER FEES: PROGRAM SERVICE EXPENSES 2,435,236. MANAGEMENT AND GENERAL EXPENSES 16,421. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 2,451,657. PEO FEES: PROGRAM SERVICE EXPENSES 26,351. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 26,351. THE EHLERS-DANLOS SOCIETY UK 35-37 LUDGATE HILL OFFICE 7 LONDON UK EC4M 7JN PROVIDING INTERNATIONAL SUPPORT UK N/A 0 0 1 0 0 0 0 0 0 0 0 0 0 1 1 1 1 0 0 0 THE EHLERS-DANLOS SOCIETY UK B 881000 CASH PAID IN US CURRENCY THE EHLERS-DANLOS SOCIETY UK M 0 THE EHLERS-DANLOS SOCIETY UK N 0 THE EHLERS-DANLOS SOCIETY UK O 0 THE EHLERS-DANLOS SOCIETY UK P 0