2022-08-30T12:16:42-05:00 2021-12-31 351307701 KRUGGEL LAWTON & COMPANY LLC 317 W FRANKLIN ST ELKHART IN 46516 990 2021-01-01 382813140 EHLERS-DANLOS SOCIETY EHLE 4106707577 1732 1ST AVE 20373 NEW YORK NY 10128 ROBERT RUBIN TREASURER 4106707577 2022-08-29 1 ROBERT RUBIN 999009999 MARGENE ZINK P01222961 5742642247 2022-08-29 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z LARA BLOOM 1732 1ST AVE 20373 NEW YORK NY 10128 4301212 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. 12 11 14 5 4162 0 2154718 4066340 86784 230652 1604 -63187 -12391 4162 2230715 4237967 540865 1744749 0 0 702182 993255 0 0 313803 441394 695291 1684441 3433295 546274 804672 2191805 2819867 869033 612121 1322772 2207746 X 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. 0 0 570788 525199 WE HELP BRING TOGETHER AND FACILITATE HEALTH PROFESSIONALS FROM ALL OVER THE WORLD TO WORK ON EQUITABLE ACCESS TO MANAGEMENT AND CARE. AT THE CORE OF OUR WORK IS OUR GLOBAL EDS AND HSD REGISTRY WHICH PROVIDES OPPORTUNITIES FOR NEW RESEARCH, GENETIC DISCOVERIES, PROGRESSION AND UNDERSTANDING AMONGST THESE CONDITIONS. WE HAVE AWARDED GLOBAL FUNDING FOR RESEARCH GRANTS WHICH CONTRIBUTE TO THE GLOBAL RESEARCH PRIORITIES, AND IT IS OUR GOAL TO ENSURE CONSISTENT AND GROUND-BREAKING RESEARCH SUPPORT TO HELP ALL THOSE IMPACTED BY THESE CONDITIONS ALL OVER THE WORLD. 62644 71961 THE EHLERS-DANLOS SOCIETY ORGANIZES MEDICAL AND SCIENTIFIC SYMPOSIUMS TO FOCUS ON THE LATEST RESEARCH, DIAGNOSTIC CRITERIA, PATHWAYS AND GUIDELINES FOR MANAGEMENT AND CARE. WE MANAGE THE WORK OF VARIOUS COLLABORATIVE COALITIONS SUCH AS THE COMMUNITY COALITION, AHEAD COALITION, HYPERMOBILITY BIOLOGY NETWORK AND FACILITATE THE WORK OF THE EDS AND HSD INTERNATIONAL CONSORTIUM. WE HOLD ANNUAL VIRTUAL AND IN-PERSON SCIENTIFIC CONFERENCES FOR HEALTH PROFESSIONALS WITH CME ACCREDITATION AND ANNUAL VIRTUAL AND IN-PERSON EDUCATIONAL CONFERENCES UNITING OUR COMMUNITY, WHICH PROVIDE OPPORTUNITIES TO INTERACT, OFFER SUPPORT AND EDUCATE FROM WORLD-LEADING EXPERTS IN EDS AND HSD. 2124031 1219550 95446 2124031 1219550 95446 2757463 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 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 3 0 14 1 1 1 0 0 0 0 0 0 0 0 0 0 0 X 12 11 0 0 0 0 0 0 0 1 1 0 0 1 0 1 0 1 1 0 AL AK AZ AR CA CO CT DE FL GA HI ID IL IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY DC IN X ERIC ALLEY 9187980312 25354 S 4130 RD CLAREMORE OK 74019 LARA BLOOM PRESIDENT 40.00 X X 0 159309 0 ELIZABETH HERNDON DIRECTOR 1.00 X 0 0 0 SANDRA CHACK DIRECTOR 1.00 X 0 0 0 EDWARD FITZGERALD III DIRECTOR 1.00 X 0 0 0 WOODROW GANDY DIRECTOR 1.00 X 0 0 0 SUSAN HASKEL DIRECTOR 1.00 X 0 0 0 PHILIP HOTCHKISS DIRECTOR 1.00 X 0 0 0 MELANIE MACLEOD DIRECTOR 1.00 X 0 0 0 LINDA NEUMANN-POTASH DIRECTOR 1.00 X 0 0 0 JENNIFER TJERNAGEL DIRECTOR 1.00 X 0 0 0 SUSAN HAWKINS CHAIR 5.00 X X 0 0 0 JOHN ZONARICH SECRETARY 5.00 X X 0 0 0 ROB RUBIN TREASURER 5.00 X X 0 0 0 ERIC ALLEY FINANCE DIRECTOR 40.00 X 72150 0 0 72150 159309 0 0 0 1 0 0 4066340 4066340 CONFERENCE 611170 230652 230652 230652 58 58 63245 -63245 -63245 -63245 4162 0 4162 4162 4237967 167407 4162 58 1060750 1060750 24840 24840 659159 659159 231459 156557 40835 34067 667763 466982 109743 91038 3460 2837 554 69 12248 9461 2317 470 78325 54119 11792 12414 129955 109967 17767 2221 9161 9161 52246 52246 287266 127614 6102 153550 5918 5918 46557 15868 23196 7493 43015 5931 26831 10253 3268 3268 33138 33138 22401 22401 36520 36520 7903 7903 DUES & SUBSCRIPTIONS 14933 1921 10784 2228 OTHER EXPENSES 3010 3010 3433295 2757463 362029 313803 1575244 1891649 354595 202087 107379 624490 92679 87894 1663 1062 1155 601 2818 2094 57935 11052 2191805 2819867 405238 298322 354595 272325 14843 41474 94357 0 869033 612121 X 141219 1322772 2066527 1322772 2207746 2191805 2819867 X 804672 326 88694 -881 -7837 X 0 1 X 1 0 X 751930 1257357 2867045 2154718 4066340 11097390 751930 1257357 2867045 2154718 4066340 11097390 5965152 5132238 45 1412 132 110 58 1757 11099147 1238843 0.46240 0.51490 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1663 1062 601 601 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 2018 THROUGH 2020 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 7 PROGRAM SERVICES GENERAL 649825 0 7 0 0 0 7 649825 0 649825 ITALY RESEARCH GRANT 200000 WIRE 0 UNITED KINDGOM OPERATIONS 483000 WIRE 0 BELGIUM BASIC SCIENCE GRANT AND HEDS GRANT 350000 WIRE 0 AUSTRIA RESEARCH GRANT 99159 WIRE 0 4 SPRING MICROGRANT 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 PART III ACCOUNTING METHOD: 1 STANFORD UNIVERSITY 485 BROADWAY REDWOOD CITY CA 94063 941156365 200000 0 RESEARCH GRANT UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 134 E FRANKLIN STREET AVENUE CHAPEL HILL NC 27514 561718737 63000 0 RESEARCH GRANT MEDICAL UNIVERSITY OF SOUTH CAROLINA 171 ASHLEY AVE SUITE 419 CHARLESTON SC 29425 576028985 200000 0 RESEARCH GRANT CHILDREN'S MERCY HOSPITAL 2401 GILLHAM ROAD KANSAS CITY MO 64108 440605373 200000 0 HEDS GRANT JOHN HOPKINS UNIVERSITY 733 N BROADWAY BALTIMORE MD 21205 520591627 150000 0 RESEARCH GRANT 5 FALL MICROGRANTS 5 24840 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 PRESIDENT 0 154304 0 5005 0 0 0 0 0 0 0 159309 0 0 PART I, LINE 3 LARA BLOOM'S COMPENSATION IS ESTABLISHED BY APPROVAL FROM THE BOARD OF DIRECTORS. 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 15 LARA BLOOM'S COMPENSATION IS APPROVED BY THE BOARD OF DIRECTORS. 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 XI, LINE 9: FOREIGN CURRENCY TRANSLATION LOSS -5,105. DISCOUNT -2,732. 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 C 483000