2026-05-14T21:23:31-05:00 2025-12-31 510229493 BARBACANE THORNTON AND COMPANY 503 CARE RD SUITE 100 WILMINGTON DE 19809 990 2025-01-01 222480896 CHARCOT-MARIE-TOOTH ASSOCIATION CHAR 8006062682 PO BOX 105 GLENOLDEN PA 19036 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 6104272971 2026-05-14 JEFFREY A KOWALCZYK CPA P01563311 3024788940 2025 2025-03-06 01:10:19Z SUZANNE BRUHN PO BOX 105 GLENOLDEN PA 19036 7058095 0 X WWW.CMTAUSA.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 ULTIMATELY, TO FUND A CURE. 17 17 14 125 0 0 4074711 5717540 1282115 810547 421917 287629 0 48315 5778743 6864031 2339962 3342651 0 0 1351608 1566784 0 0 341849 2100099 2446390 5791669 7355825 -12926 -491794 9548719 8112362 0 2054372 9548719 6057990 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 4969990 3342651 810547 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. 1703553 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. 6673543 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 1 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 1 35 0 1 14 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 8006062682 PO BOX 105 GLENOLDEN PA 19036 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 40.00 X X 300000 0 10996 JEANA SWEENEY CHIEF ENGAGEMENT AND GIFT OFFICER 40.00 X 144515 0 5664 KATHERINE FORSEY CHIEF RESEARCH OFFICER 40.00 X 135441 0 6571 LAUREL RICHARDSON DIRECTOR OF COMMUNITY OUTREACH 40.00 X 108061 0 3840 GILLES BOUCHARD BOARD CHAIR 1.00 X X 0 0 0 KEVIN SAMI TREASURER 1.00 X X 0 0 0 HERBERT BERON SECRETARY 1.00 X X 0 0 0 WENDY ARNONE BOARD MEMBER 1.00 X 0 0 0 DAVID APPLE BOARD MEMBER 1.00 X 0 0 0 DAN CHAMBY BOARD MEMBER 1.00 X 0 0 0 DAVID COLDIRON BOARD MEMBER 1.00 X 0 0 0 BERNARD COULIE BOARD MEMBER 1.00 X 0 0 0 GARY J GASPER BOARD MEMBER 1.00 X 0 0 0 CATHERINE ILLINGWORTH BOARD MEMBER 1.00 X 0 0 0 KEVIN MARKS BOARD MEMBER 1.00 X 0 0 0 JON PASTOR BOARD MEMBER 1.00 X 0 0 0 DR STEVEN SCHERER BOARD MEMBER 1.00 X 0 0 0 DR MICHAEL SHY BOARD MEMBER 1.00 X 0 0 0 DAVID STARK BOARD MEMBER 1.00 X 0 0 0 JOHN SVAREN BOARD MEMBER 1.00 X 0 0 0 CRAIG ZELTSAR BOARD MEMBER 1.00 X 0 0 0 688017 0 27071 4 0 1 0 STEPHEN LIN 1079 SUNSET DRIVE SAN CARLOS CA 94070 DIR OF RESEARCH ALLIANCES AND MANAGER OF 180000 1 652007 5065533 287742 5717540 RESEARCH ALLIANCE REVE 900099 810547 810547 810547 287629 287629 198841 652007 194064 4777 4777 OTHER REVENUE 900099 43538 43538 43538 6864031 810547 0 335944 2933934 2933934 28557 28557 380160 380160 715088 560376 66656 88056 668628 523968 62326 82334 32144 25190 2996 3958 30987 24283 2888 3816 119937 93988 11180 14769 37243 29021 5498 2724 126050 98222 18607 9221 533948 430550 80481 22917 62239 51834 5179 5226 315121 286730 10378 18013 335568 262966 31279 41323 158510 110957 42798 4755 EVENT COSTS 441010 396273 44737 CAMP FEES 426959 426959 MISCELLANEOUS 9742 9575 167 7355825 6673543 340433 341849 1169913 638497 47601 101801 8097765 6921397 281041 403066 9548719 8112362 97942 1956430 0 2054372 X 7507710 3578464 2041009 2479526 9548719 6057990 9548719 8112362 -491794 -2998935 X X 0 1 X 1 0 X 5161270 8795013 4299419 4074711 5722317 28052730 1581813 1308834 1282115 810547 4983309 5161270 10376826 5608253 5356826 6532864 33036039 509845 5326034 1682601 396280 557321 8472081 825809 879557 1457521 1896950 5059837 509845 6151843 2562158 1853801 2454271 13531918 19504121 9495 16571 43146 421917 287629 778758 9495 16571 43146 421917 287629 778758 116260 122269 104563 343092 5287025 10515666 5755962 5778743 6820493 34157889 0.57100 0.59440 0.02280 0.01580 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30000 30000 6784213 6814213 490711 122678 0 0 463165 443840 407270 490711 1804986 2707479 30000 30300 30300 30000 120600 115791 110960 101818 122678 451247 676871 0 7058095 194064 194064 6864031 0 6864031 7549889 194064 194064 7355825 0 7355825 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 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 1 CMT RESEARCH 344660 NORTH AMERICA 0 0 CMT RESEARCH 35500 0 1 0 0 0 1 380160 0 380160 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES CMT RESEARCH 35500 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 344660 WIRE TRANSFER 0 0 0 0 0 0 0 WALK & CYCLE 467018 381709 85309 85309 PAULSEN 4-C GALA 203624 112067 91557 91557 4 175429 158231 17198 17198 846071 652007 194064 194064 194064 0 0 CLEVELAND CLINICLERNER RESEARCH INS PO BOX 931652 CLEVELAND OH 44193 912153073 501C3 15446 0 CMT RESEARCH HENRY JACKSON FOUNDATION 6720A ROCKLEDGE DRIVE BETHESDA MD 20817 521313011 501C3 20000 0 CMT RESEARCH JD GLADSTONE INSTITUTES 650 OWENS STREET SAN FRANCISCO CA 94158 237203666 501C3 300000 0 CMT RESEARCH PSYCHOGENICS INC 257 PARK AVENUE S 7TH FLOOR NEW YORK NY 10010 942963168 773212 0 CMT RESEARCH THE JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 102115130 501C3 5377 0 CMT RESEARCH UNIVERSITY OF ROCHESTER 500 JOSEPH C WILSON BLVD ROCHESTER NY 14627 160743209 501C3 1045708 0 CMT RESEARCH UNIVERSITY OF WISCONSIN - MADISON 21 N PARK ST STE 6401 MADISON WI 53715 396006492 501C3 25000 0 CMT RESEARCH ALBANY MEDICAL COLLEGE 45 NEW SCOTLAND AVENUE ALBANY NY 12208 141338310 501C3 140670 0 CMT RESEARCH CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVENUE NW WASHINGTON DC 20010 521640403 501C3 10000 0 CMT RESEARCH THE GENESIS PROJECT FOUNDATION 6619 SOUTH DIXIE HIGHWAY UNIT 278 MIAMI FL 33143 364781152 501C3 423000 0 CMT RESEARCH UNIVERSITY OF PENNSYLVANIA 34TH SPRUCE STREET PHILADELPHIA PA 19104 231352685 501C3 52925 0 CMT RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE SAN DIEGO CA 92161 472452128 501C3 90860 0 CMT RESEARCH PATIENT SUPPORT AND TRAVEL REIMBURSEMENT 8 28557 X X X 0 0 0 0 0 0 0 0 0 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 300000 0 0 0 0 0 9202 0 1794 0 310996 0 0 0 JEANA SWEENEY CHIEF ENGAGEMENT AND GIFT OFFICER 134515 0 10000 0 0 0 4377 0 1287 0 150179 0 0 0 SHARK TOOTH BIOTECH 35%+ CONTROLLED ENTITY OF A BOARD MEMBER 248763 EQUITY INVESTMENT IN SHARK TOOTH BIOTECH 0 X 11 287742 FMV 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. FORM 990, PART XII, LINE 1 EFFECTIVE FOR 2025, THE ASSOCIATION HAS CHANGED ITS METHOD OF ACCOUNTING FROM THE CASH BASIS TO THE ACCRUAL BASIS