2019-07-25T08:51:18-05:00 2018-12-31 232896692 BBD LLP 1835 MARKET STREET 3RD FLOOR PHILADELPHIA PA 19103 990 2018-01-01 222480896 CHARCOT-MARIE-TOOTH ASSOCIATION CHAR 6104999264 PO BOX 105 GLENOLDEN PA 19036 AMY GRAY CHIEF EXECUTIVE OFFICER 6104999264 2019-07-25 1 JENNIFER SOLOT P00749373 2155677770 50.203.243.162 2019-07-25 09:50:47 ED P 42EE97634FBA116BD812AEF6F3A565108EF8C38C 8837A190850F5CD245E5AA70DF77B417E26F19EE 2018 2019-02-21 02:37:17Z AMY GRAY PO BOX 105 GLENOLDEN PA 19036 5094904 0 X WWW.CMTAUSA.ORG X 1983 PA FIGHTING TO END CHARCOT-MARIE-TOOTH DISEASE. 9 9 9 200 0 0 2088880 4949414 494088 0 835 26745 555026 8704 3138829 4984863 884528 1109850 0 0 600482 763390 6921 0 217772 1047756 1277092 2539687 3150332 599142 1834531 1835763 3645409 73731 0 1762032 3645409 TO SUPPORT THE DEVELOPMENT OF NEW DRUGS TO TREAT CHARCOT-MARIE-TOOTH DISEASE (CMT), TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH CMT AND ULTIMATELY, TO FIND A CURE. 0 0 2021624 1109850 CMTA AWARDS RESEARCH FELLOWSHIPS AND GRANTS FOR RESEARCH ON CHARCOT-MARIE-TOOTH DISEASE. IT ALSO HOSTS BI-ANNUAL MEETINGS OF ALL RESEARCHERS RECEIVING ITS FUNDING TO PROMOTE KNOWLEDGE EXCHANGE AND SYNERGY. IT USES THE SERVICES OF A MEDICAL RESEARCH CONSULTANT TO OVERSEE THE SELECTION OF THE RECIPIENTS OF THE RESEARCH FUNDING AND TO WRITE THE GRANTS AND CONTRACTS WITH THESE RESEARCHERS. 683446 CMTA ORGANIZES AND CONDUCTS SUPPORT GROUPS, CONFERENCES AND EDUCATIONAL WEBINARS FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO SHARE KNOWLEDGE AND PROMOTE AWARENESS OF CHARCOT-MARIE-TOOTH DISEASE.CMTA ALSO PUBLISHES A BI-MONTHLY NEWSLETTER AND OTHER EDUCATIONAL PUBLICATIONS WHICH ARE AVAILABLE TO THE PUBLIC. CMTA ALSO MAINTAINS A WEBSITE FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO ASSIST IN UNDERSTANDING AND TREATING CHARCOT-MARIE-TOOTH DISEASE. 2705070 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 23 0 1 9 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 9 9 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL CA CO CT DC FL IL KS ME MD MA MI MN MS NV NH NJ NM NY NC ND OH OK OR PA SC TN UT VA WA WV WI X X THE ORGANIZATION 6104999264 PO BOX 105 GLENOLDEN PA 19036 GILLES BOUCHARD CHAIRMAN 0.00 X X 0 0 0 GARY GASPER TREASURER 0.00 X X 0 0 0 HERBERT BERON SECRETARY 0.00 X X 0 0 0 DR THOMAS DUBENSKY DIRECTOR 0.00 X 0 0 0 LAURA FAVA DIRECTOR 0.00 X 0 0 0 ALAN KOROWITZ DIRECTOR 0.00 X 0 0 0 STEVEN O'DONNELL DIRECTOR 0.00 X 0 0 0 CHRIS OUELLETTE DIRECTOR 0.00 X 0 0 0 PHYLLIS SANDERS DIRECTOR 0.00 X 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 40.00 X 250000 0 8220 KIMBERLY MAGEE DIRECTOR OF FINANCE 40.00 X 77500 0 2929 327500 0 11149 1 0 1 0 HUMANFIRST THERAPEUTICS 9600 DEWITT DRIVE SUITE 1 SILVER SPRING MD 20910 MEDICAL RESEARCH 156472 1 421162 102846 4425406 142910 4949414 26745 26745 110041 421162 110041 0 OTHER REVENUE 900099 8704 8704 8704 4984863 0 0 35449 1009560 1009560 10500 10500 89790 89790 338567 237055 33947 67565 368891 288707 43111 37073 3036 2627 327 82 6022 4537 668 817 46874 34864 5106 6904 26961 18000 8961 30171 30171 230774 181248 42551 6975 63470 46286 3637 13547 180367 74355 55680 50332 222905 195509 5105 22291 224107 193107 28397 2603 CAMP FEES 147425 147425 EVENT COSTS 121195 118858 2337 MISCELLANEOUS 29717 22471 7246 3150332 2705070 227490 217772 1685878 1603177 291909 125000 7650 0 17235 1750323 1835763 3645409 73731 73731 0 X 641278 561978 1120754 3083431 1762032 3645409 1835763 3645409 X 1834531 48846 X X 0 1 X 1 0 X 2361672 2297705 1642776 2088880 4949414 13340447 944580 1628420 1767404 494923 4835327 3306252 3926125 3410180 2583803 4949414 18175774 2313627 2313627 72837 72837 2386464 2386464 15789310 26745 26745 26745 26745 118745 118745 3306252 3926125 3410180 2583803 5094904 18321264 0.86180 1.00000 0.00150 0.00000 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2018 AMOUNT: $ 8,704. FUNDRAISING REVENUE - 2018 AMOUNT: $ 110,041. 30171 30171 2902389 2932560 296628 74157 0 0 314955 293971 268154 296628 1173708 1760562 30300 31725 30520 30171 122716 78739 73493 67039 74157 293428 440142 0 0 0 0 X 5094904 0 5094904 -110041 -110041 4984863 3260373 0 3260373 -110041 -110041 3150332 PART X, LINE 2: ACCOUNTING STANDARDS REQUIRE ENTITIES TO EVALUATE, MEASURE, RECOGNIZE AND DISCLOSE ANY UNCERTAIN INCOME TAX POSITIONS TAKEN ON THEIR TAX RETURNS. ACCOUNTING STANDARDS PRESCRIBE A MINIMUM THRESHOLD THAT A TAX POSITION IS REQUIRED TO MEET IN ORDER TO BE RECOGNIZED IN THE FINANCIAL STATEMENTS. THE ORGANIZATION BELIEVES THAT THEY HAD NO UNCERTAIN TAX POSITIONS. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES -110,041. PART XII, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES -110,041. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANT MAKING RESEARCH GRANTS 89790 EAST ASIA AND THE PACIFIC 0 0 FUNDRAISING EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 FUNDRAISING NORTH AMERICA 0 0 FUNDRAISING 0 0 0 0 0 0 89790 0 89790 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 27018 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 20000 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 42772 WIRE TRANSFER 3 0 0 0 0 0 0 PART I, LINE 2: CMTA REQUIRES BY CONTRACT PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. ITS CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. CYCLE 4 CMT 140719 101035 39684 39684 NY EVENT 235548 173514 62034 62034 2 154936 146613 8323 8323 531203 421162 110041 110041 110041 0 1 COLUMBIA UNIVERSITY PO BOX 29789 NEW YORK NY 10087 135598093 501(C)(3) 135215 CMT RESEARCH GENEZYME CORPORATION 5 THE MOUNTAIN ROAD FRAMINGHAM MA 01701 061047163 125000 CMT RESEARCH HORIZON DISCOVERY PO BOX 122 BOYERTOWN PA 19512 942963168 32871 CMT RESEARCH JACKSON LABORATORY 610 MAIN STREET BAR HARBOR ME 04609 010211513 501(C)(3) 5329 CMT RESEARCH PSYCHOGENICS INCORPORATED 257 PARK AVENUE SOUTH 7TH FLOOR NEW YORK NY 10010 942963168 312300 CMT RESEARCH RESEARCH FOUNDATION FOR THE STATE UNIVERSITY OF NEW YORK 402 CROFTS HALL BUFFALO NY 14260 141368361 501(C)(3) 49500 CMT RESEARCH RNAI CORE FACILITY 1275 YORK AVENUE NEW YORK NY 10065 131924236 501(C)(3) 24950 CMT RESEARCH UB FOUNDATION SERVICES PO BOX 900 BUFFALO NY 14226 160865182 501(C)(3) 42250 CMT RESEARCH UNIVERSITY OF ILLINOIS 1 COLLEGE DRIVE 240B EAST PEORIA IL 61635 376000511 501(C)(3) 42435 CMT RESEARCH UNIVERSITY OF IOWA-CARVER 200 HAWKINS DRIVE 2007 RCF IOWA CITY IA 52242 426004813 501(C)(3) 50346 CMT RESEARCH UNIVERSITY OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 49322 CMT RESEARCH UNIVERSITY OF PENNSYLVANIA PO BOX 785541 PHILADELPHIA PA 19178 231352685 501(C)(3) 50861 CMT RESEARCH UNIVERSITY OF WISCONSIN-MADISON 21 NORTH PARK STREET SUITE 6401 MADISON WI 53715 396006492 501(C)(3) 54300 CMT RESEARCH 13 FELLOWSHIPS 9 10500 PART I, LINE 2: CMTA REQUIRES BY CONTRACT PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. ITS CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. X 1 0 X 0 0 0 0 0 0 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 240000 0 10000 0 0 0 7500 0 720 0 258220 0 0 0 X 4 142910 FMV 0 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 FAMILY RELATIONSHIP AMONG BOARD MEMBERS: GILLES BOUCHARD, PRESIDENT OF THE BOARD, AND CHRIS OUELLETTE, BOARD MEMBER, ARE BROTHERS-IN-LAW. FORM 990, PART VI, SECTION B, LINE 11B GOVERNING BODY REVIEW OF FORM 990: FORM 990 WILL BE REVIEWED BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION B, LINE 12C MONITORING AND ENFORCEMENT OF THE CONFLICT OF INTEREST POLICY: THE ORGANIZATION HAD A WORKSHOP FOR ALL BOARD MEMBERS ON THE CONFLICT OF INTEREST POLICY ANNUALLY. THE PHYSICIANS ON THE BOARD DISCLOSE ALL PERTINENT RESEARCH WORK, AND DO NOT VOTE ON RESEARCH SPENDING. THE BOARD CHAIRMAN AND CEO REVIEW AND MONITOR THE CONFLICT OF INTEREST DISCLOSURES. FORM 990, PART VI, SECTION B, LINE 15 PROCESS FOR DETERMINING COMPENSATION: THE ORGANIZATION'S BOARD OF DIRECTORS DETERMINES THE CEO'S COMPENSATION ANNUALLY, CONSIDERING WHATEVER FACTORS AND INFORMATION IT DEEMS APPROPRIATE. FORM 990, PART VI, SECTION C, LINE 19 AVAILABILITY OF OTHER DOCUMENTS: UPON REQUEST BY MAIL, TELEPHONE, AND/OR EMAIL. AUDITED FINANCIAL STATEMENTS ARE AVAILABLE ON THE CMTA'S WEBSITE. FORM 990, PART XI, LINE 9: ACCRUAL TO CASH CONVERSION 48,846. FORM 990, PART XII, LINE 1: CMTA CHANGED ITS ACCOUNTING METHOD FROM ACCRUAL TO CASH BASIS AS THEY BELIEVE THIS IS THE MORE APPROPRIATE METHOD OF ACCOUNTING FOR THEIR ORGANIZATION.