2023-08-21T21:51:55-05:00 2022-12-31 232896692 BBD LLP 1835 MARKET STREET 3RD FLOOR PHILADELPHIA PA 19103 990 2022-01-01 222480896 CHARCOT-MARIE-TOOTH ASSOCIATION CHAR 6104272971 8 S GARFIELD AVE GLENOLDEN PA 19036 KIMBERLY MAGEE DIRECTOR OF FINANCE AND ADMIN 6104272971 2023-08-21 1 KIMBERLY MAGEE XXX-XX-XXXX 0 JENNIFER SOLOT P00749373 2155677770 2023-08-21 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z KIMBERLY MAGEE 8 S GARFIELD AVE GLENOLDEN PA 19036 10595119 0 X WWW.CMTAUSA.ORG X 1983 PA FIGHTING TO END CHARCOT-MARIE-TOOTH DISEASE. 14 14 12 100 0 0 5161270 8795013 0 1581813 7409 15898 0 6216 5168679 10398940 2546913 3704561 0 0 794012 992749 0 0 282086 1498134 1848080 4839059 6545390 329620 3853550 6028701 9861023 0 0 6028701 9861023 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 4818479 3704561 1581813 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. 1174302 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. 5992781 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 14 0 1 12 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 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 6104272971 8 S GARFIELD AVE 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 DAN CHAMBY DIRECTOR 0.00 X 0 0 0 DAVID COLDIRON DIRECTOR 0.00 X 0 0 0 DR THOMAS DUBENSKY DIRECTOR 0.00 X 0 0 0 PETE FOLEY DIRECTOR 0.00 X 0 0 0 ALAN KOROWITZ DIRECTOR 0.00 X 0 0 0 DAVID NORCOM 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 JONATHAN PASTOR DIRECTOR 0.00 X 0 0 0 KEVIN SAMI DIRECTOR 0.00 X 0 0 0 PHYLLIS SANDERS DIRECTOR 0.00 X 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 40.00 X 269038 0 9734 KIMBERLY MAGEE DIRECTOR OF FINANCE AND ADMINISTRATION 40.00 X 94769 0 3389 JEANA SWEENEY CHIEF ENGAGEMENT & GIFT OFFICER 40.00 X 125538 0 4476 489345 0 17599 2 0 1 0 HUMANFIRST THERAPEUTICS 9600 DEWITT DRIVE SUITE 1 SILVER SPRING MD 20910 RESEARCH CONSULTANT 311207 1 287948 125000 8382065 80825 8795013 PROGRAM SERVICE REVENUE 900099 1581813 1581813 1581813 16571 16571 79453 80126 -673 -673 -673 116053 287948 116053 0 OTHER REVENUE 900099 6216 6216 6216 10398940 1581813 0 22114 3248350 3248350 67500 67500 388711 388711 376930 214773 86771 75386 528146 477048 11329 39769 8712 7529 88 1095 9583 8777 333 473 69378 55322 6793 7263 52177 48477 3700 30000 30000 577191 460971 46596 69624 147693 122589 12186 12918 276433 195283 35015 46135 140775 119659 14078 7038 165978 113895 52083 EVENT COSTS 227799 210208 17591 CAMP FEES 217626 217626 MISCELLANEOUS 12408 6063 1551 4794 6545390 5992781 270523 282086 3884618 7382998 2144083 2478025 6028701 9861023 0 0 X 552215 5412200 5476486 4448823 6028701 9861023 6028701 9861023 3853550 -21228 0 X X 0 1 X 1 0 X 4949414 4695526 5201933 5161270 8795013 28803156 1581813 1581813 4949414 4695526 5201933 5161270 10376826 30384969 2313627 484980 1221523 509845 5326034 9856009 72837 355637 825809 1254283 2386464 840617 1221523 509845 6151843 11110292 19274677 26745 42833 24592 9495 16571 120236 26745 42833 24592 9495 16571 120236 118745 188896 83315 116260 122269 629485 5094904 4927255 5309840 5287025 10515666 31134690 0.61910 0.76000 0.00390 0.00450 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2018 AMOUNT: $ 8,704. 2019 AMOUNT: $ 13,357. 2020 AMOUNT: $ 6,691. 2022 AMOUNT: $ 6,216. FUNDRAISING REVENUE - 2018 AMOUNT: $ 110,041. 2019 AMOUNT: $ 175,539. 2020 AMOUNT: $ 76,624. 2021 AMOUNT: $ 116,260. 2022 AMOUNT: $ 116,053. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30000 30000 6233304 6263304 463165 115791 0 0 341924 337394 382819 463165 1525302 2287953 30300 30000 30300 30000 120600 85481 84349 95705 115791 381326 571989 0 X 10493765 -21228 -21228 10514993 -116053 -116053 10398940 6661443 0 6661443 -116053 -116053 6545390 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 IT HAD NO UNCERTAIN TAX POSITIONS. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES -116,053. PART XII, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES -116,053. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT MAKING RESEARCH GRANTS 388711 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 FUNDRAISING NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 FUNDRAISING EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 0 0 FUNDRAISING MIDDLE EAST AND NORTH AFRICA 0 0 FUNDRAISING 0 0 0 0 0 0 388711 0 388711 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 10812 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 65120 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 24723 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 208056 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 80000 WIRE TRANSFER 0 0 5 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. PART III ACCOUNTING METHOD: CYCLE 4 CMT 256810 173495 83315 83315 KENTUCKY DERBY PARTY 84624 51886 32738 32738 3 62567 62567 404001 287948 116053 116053 116053 0 1 ARQ GENETICS LLC 1110 MAIN ST STE B BASTROP TX 78602 801389156 9610 0 CMT RESEARCH CLEVELAND CLINICLERNER RESEARCH INST PO BOX 931652 CLEVELAND OH 44193 912153073 501(C)(3) 37672 0 CMT RESEARCH CHARLES RIVER LABORATORIES 251 BALLARDVALE ST WILMINGTON MA 01887 061397316 74992 0 CMT RESEARCH ENVIGO 3565 PAYSPHERE CIRCLE CHICAGO IL 60674 841753840 90243 0 CMT RESEARCH JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 102115130 501(C)(3) 91218 0 CMT RESEARCH OHIO STATE UNIVERSITY 1960 KENNY RD COLUMBUS OH 43210 316025986 64009 0 CMT RESEARCH PSYCHOGENICS INC 257 PARK AVE S 7TH FL NEW YORK NY 10010 942963168 1893720 0 CMT RESEARCH RESEARCH FOUNDATION FOR STATE UNIVERSITY OF NEW YORK PO BOX 9 ALBANY NY 12201 141368361 501(C)(3) 121785 0 CMT RESEARCH UNIVERSITY OF CALIFORNIA 1111 FRANKLIN ST OAKLAND CA 94607 943067788 138852 0 CMT RESEARCH UNIVERSITY OF IOWA-CARVER 200 HAWKINS DR 2007 RCF IOWA CITY IA 52242 426004813 501(C)(3) 363525 0 CMT RESEARCH UNIVERSITY OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 183493 0 CMT RESEARCH UNIVERSITY OF ROCHESTER 910 GENESEE ST ROCHESTER NY 14611 160743209 501(C)(3) 31394 0 CMT RESEARCH UNIVERSITY OF WISCONSIN-MADISON 21 N PARK ST STE 6401 MADISON WI 53715 396006492 501(C)(3) 101587 0 CMT RESEARCH UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 41250 0 CMT RESEARCH 7 7 FELLOWSHIPS 7500 PATIENT SUPPORT FUND 60000 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 245038 0 24000 0 0 0 8101 0 1633 0 278772 0 0 0 X 5 80825 FMV 0 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 FAMILY RELATIONSHIP AMONG BOARD MEMBERS: GILLES BOUCHARD, CHAIRMAN 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. IF A CONFLICT OF INTEREST IS IDENTIFIED, THE RESPONSIBLE PERSON SHALL REFRAIN FROM ANY ACTION THAT MAY AFFECT CMTA'S PARTICIPATION IN SUCH CONTRACT OR TRANSACTION. 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 XII, LINE 1: THE FINANCIAL STATEMENTS HAVE BEEN PREPARED ON THE MODIFIED CASH BASIS OF ACCOUNTING, A COMPREHENSIVE BASIS OF ACCOUNTING OTHER THAN GENERALLY ACCEPTED ACCOUNTING PRINCIPLES. UNDER THE CASH BASIS, REVENUE IS RECOGNIZED WHEN RECEIVED RATHER THAN WHEN EARNED AND EXPENSES ARE RECOGNIZED WHEN PAID RATHER THAN WHEN THE OBLIGATION IS INCURRED. THE CASH BASIS HAS BEEN MODIFIED BY THE RECORDING OF INVESTMENTS.