2026-04-10T09:00:02-05:00 2024-12-31 510229493 BARBACANE THORNTON AND COMPANY 503 CARE RD SUITE 100 WILMINGTON DE 19809 990 2024-01-01 222480896 CHARCOT-MARIE-TOOTH ASSOCIATION CHAR 6104272971 PO BOX 105 GLENOLDEN PA 19036 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 6104272971 2026-04-10 1 JEFFREY A KOWALCZYK CPA P01563311 3024788940 2024 2025-03-06 01:10:19Z X SUZANNE BRUHN PO BOX 105 GLENOLDEN PA 19036 6074621 0 X WWW.CMTUSA.ORG X 1983 PA 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 UNTIMATELY, TO FUND A CURE. 17 17 13 125 0 0 4357172 4074711 1308834 1282115 77872 421917 17630 0 5761508 5778743 2963560 2339962 0 0 1117162 1351608 0 0 326214 2211244 2100099 6291966 5791669 -530458 -12926 9566018 9548719 0 0 9566018 9548719 X CMTA AWARDS RESEARCH FELLOWSHIPS AND GRANTS FOR RESEARCH ON CHARCOT-MARIE-TOOTH DIESEASE. CMTA 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 RECEIPIENTS OF THE RESEARCH FUNDING AND TP WRITE THE GRANTS AND CONTRACTS WITH THESE RESEARCHERS. 0 0 3864194 2339962 1282115 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 SCIENTIFIC ADVISORY BOARD OF RESEARCH AND CLINICAL EXPERTS TO OVERSEE THE SELECTION OF THE RECIPIENTS OF THE RESEARCH FUNDING AND TO WRITE THE GRANTS AND CONTRACTS WITH THESE RESEARCHERS. 1281204 CMTA ORGANIZES AND CONDUCTS SUPPORT GROUPS, CONFERENCES, A CAMP FOR CHILDREN AGES 10-18 WITH CMT AT 2 U.S. LOCATIONS, 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. 5145398 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 47 0 1 13 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 17 17 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 X X THE ORGANIZATION 6104272971 PO BOX 105 GLENOLDEN PA 19036 ALAN KOROWITZ BOARD MEMBER (THRU 2/24) 0.00 X 0 0 0 BERNARD COULIE BOARD MEMBER (EFF 2/24) 0.00 X 0 0 0 CRAIG ZELTSAR BOARD MEMBER 1.00 X 0 0 0 DAN CHAMBY BOARD MEMBER 1.00 X 0 0 0 DAVID APPLE BOARD MEMBER 1.00 X 0 0 0 DAVID COLDIRON BOARD MEMBER 1.00 X 0 0 0 DR MICHAEL SHY BOARD MEMBER 1.00 X 0 0 0 DR STEVEN SCHERER BOARD MEMBER 1.00 X 0 0 0 DR THOMAS DUBENSKY BOARD MEMBER 1.00 X 0 0 0 GARY J GASPER BOARD MEMBER 1.00 X 0 0 0 GILLES BOUCHARD CHAIRMAN 1.00 X X 0 0 0 HERBERT BERON SECRETARY 1.00 X X 0 0 0 JOHN SVAREN BOARD MEMBER 1.00 X 0 0 0 JON PASTOR BOARD MEMBER 1.00 X 0 0 0 KEVIN MARKS BOARD MEMBER (EFF 2/24) 1.00 X 0 0 0 KEVIN SAMI TREASURER 1.00 X X 0 0 0 PARTRICIA VERDUIN OHD BOARD MEMBER (EFF 4/24) 1.00 X 0 0 0 PHYLLIS SANDERS BOARD MEMBER (THRU 2/24) 1.00 X 0 0 0 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 40.00 X X 300000 0 11016 WENDY ARNONE BOARD MEMBER (EFF 3/24) 1.00 X 0 0 0 STEVEN O'DONNELL BOARD MEMBER (THRU 12/24) 1.00 X 0 0 0 DAVID NORCOM BOARD MEMBER (THRU 9/24) 1.00 X 0 0 0 KIMBERLY MAGEE DIRECOT OF FINANCE AND ADMIN 40.00 X 98400 0 3676 JEANA SWEENEY CHIEF ENGAGEMENT AND GIFT OFFICER 40.00 X 140000 0 5515 KATHERINE FORSEY CHIEF RESEARCH OFFICER 40.00 X 125404 0 6552 LAUREL RICHARDSON DIRECTOR OF COMMUNITY OUTREACH 40.00 X 101520 0 3724 765324 0 30483 4 0 1 0 0 707352 3367359 4074711 RESEARCH ALLIANCE REVE 900099 1282115 1282115 1282115 421917 421917 295878 707352 295878 0 5778743 1282115 0 421917 1765178 1765178 574784 574784 413092 323718 50868 38506 806629 632112 62826 111691 28676 22472 2673 3531 103211 80881 9621 12709 50535 39378 7460 3697 80300 62572 11854 5874 570166 458851 85836 25479 63901 53218 5317 5366 215613 156595 21574 37444 265231 207847 24723 32661 136412 95489 36831 4092 EVENT COSTS 345263 300099 45164 CAMP FEES 344939 344939 MISCELLANEOUS 27739 27265 474 5791669 5145398 320057 326214 908308 1169913 8457711 8097765 199999 281041 9566018 9548719 0 0 X 6460062 7507710 3105956 2041009 9566018 9548719 9566018 9548719 -12926 -4373 0 X 0 1 X 1 0 X 5201933 5161270 8795013 4299419 4074711 27532346 1581813 1308834 1282115 4172762 5201933 5161270 10376826 5608253 5356826 31705108 1221523 509845 5326034 1682601 396280 9136283 825809 879557 1457521 3162887 1221523 509845 6151843 2562158 1853801 12299170 19405938 24592 9495 16571 43146 421917 515721 24592 9495 16571 43146 421917 515721 83315 116260 122269 104563 426407 5309840 5287025 10515666 5755962 5778743 32647236 0.59440 0.62140 0.01580 0.00430 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30300 30300 5115098 5145398 407270 101818 0 0 382819 463165 443840 407270 1697094 2545641 30300 30000 30300 30300 120900 95705 115791 110960 101818 424274 636411 0 6070248 -4373 295878 291505 5778743 0 5778743 6087547 295878 295878 5791669 0 5791669 PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES REPORTED AT GROSS ON FS PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES REPORTED AT GROSS ON FS 0 0 0 0 0 0 0 0 0 0 NORTH AMERICA CMT RESEARCH 96705 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 574784 WIRE TRANSFER 0 0 0 0 0 0 0 WALK & CYCLE 403481 319810 83671 83671 PAULSEN-4C GALA 254230 101911 152319 152319 4 345519 285631 59888 59888 1003230 707352 295878 295878 295878 0 0 ARQ GENETICS LLC PO BOX 2024 BASTROP TX 78602 6934 0 CMT RESEARCH CLEVELAND CLINICLERNER RESEARCH INS PO BOX 931652 CLEVELAND OH 44193 912153073 501C3 42689 0 CMT RESEARCH FRONTAGE LABORATORIES INC 700 PENNSYLVANIA DRIVE EXTON PA 19341 5345 0 CMT RESEARCH HENRY JACKSON FOUNDATION 6720A ROCKLEDGE DRIVE BETHESDA MD 20817 501C3 55000 0 CMT RESEARCH JD GLADSTONE INSTITUTES 650 OWENS STREET SAN FRANCISCO CA 94158 57398 0 CMT RESEARCH PSYCHOGENICS INC 257 PARK AVENUE S 7TH FLOOR NEW YORK NY 10010 942963168 684436 0 CMT RESEARCH THE JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 102115130 501C3 6623 0 CMT RESEARCH UNIVERSITY OF ROCHESTER 500 JOSEPH C WILSON BLVD ROCHESTER NY 14627 501C3 241946 0 CMT RESEARCH UNIVERSITY OF WISCONSIN - MADISON 21 N PARK ST STE 6401 MADISON WI 53715 396006492 501C3 62306 0 CMT RESEARCH UNIVERSITY OF IOWA 200 HAWKINS DRIVE 2007 RCF IOWA CITY IA 52242 426004813 501C3 134380 0 CMT RESEARCH UNIVERSITY OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501C3 45096 0 CMT RESEARCH UT SOUTHWESTERN MEDICAL CENTER PO BOX 841765 DALLAS TX 75284 756002868 501C3 224010 0 CMT RESEARCH 0 0 0 0 0 0 0 0 0 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 300000 0 0 0 0 0 9202 0 1814 0 311016 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B FORM 990 WILL BE REVIEWED BY THE BOARD OF DIRECTORS FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS SENT OUT TO ALL BOARD MEMBERS AND KEY EMPLOYEE AND REVIEWED BY THE NOMINATING AND GOVERNANCE COMMITTEE OF THE BOARD FORM 990, PART VI, SECTION B, LINE 15 COMPENSATION FOR EMPLOYEES IS OVERSEEN BY THE FINANCE COMMITTEE OF THE BOARD. THE ORGANIZATION HAS PERFORMED A MARKET COMPARISON CHECK FOR ALL EMPLOYEES USING AN EXTERNAL CONSULTANT AND REVIEWED BY THE COMMITTEE FORM 990, PART VI, SECTION C, LINE 19 UPON REQUEST BY MAIL, TELEPHONE, AND/OR EMAIL. AUDITED FINANCIAL STATEMENTS ARE AVAILABLE ON THE CMTA'S WEBSITE. BASIS OF ACCOUNTING THE ORGANIZATION IS IN THE PROCESS OF CONVERTING ITS FINANCIAL REPORTING FROM CASH BASIS TO ACCRUAL BASIS ACCOUNTING. THE ORGANIZATION'S 2025 FINANCIAL STATEMENTS AND FORM 990 WILL BE PREPARED ON AN ACCRUAL BASIS OF ACCOUNTING IN ACCORDANCE WITH ACCOUNTING PRINCIPLES GENERALLY ACCEPTED IN THE UNITED STATES OF AMERICA. FORM 990 SECTION B FORM 990 HAS BEEN AMENDED TO CORRECT THE FOLLOWING INFORMATION: FORM 990, PART VI, ITEM 11A HAS BEEN REVISED TO "YES" TO CONFIRM THAT THE BOARD REVIEWS THE FOM 990 BEFORE FILING. FORM 990, PART VI, ITEM 14 HAS BEEN REVISED TO "YES" TO CONFIRM THAT THE ORGANIZATION HAS A WRITTEN DOCUMENT RETENTION AND DESTRUCTION POLICY.