2024-07-30T12:37:27-05:00 2023-12-31 232896692 BBD LLP 1835 MARKET STREET SUITE 300 PHILADELPHIA PA 19103 990 2023-01-01 222480896 CHARCOT-MARIE-TOOTH ASSOCIATION CHAR 6104272971 8 S GARFIELD AVE GLENOLDEN PA 19036 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER 6104272971 2024-07-30 1 0 ADAM WATSON P01367206 2155677770 2024-07-30 2023 2024-08-08 14:25:15Z SUZANNE BRUHN 8 S GARFIELD AVE GLENOLDEN PA 19036 11627521 0 X WWW.CMTAUSA.ORG X 1983 PA FIGHTING TO END CHARCOT-MARIE-TOOTH DISEASE. 17 17 11 150 0 0 8795013 4357172 1581813 1308834 15898 77872 6216 17630 10398940 5761508 3704561 2963560 0 0 992749 1117162 0 0 289304 1848080 2211244 6545390 6291966 3853550 -530458 9861023 9566018 0 0 9861023 9566018 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 4273187 2963560 1308834 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. 1360387 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. 5633574 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 40 0 1 11 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 17 17 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 KEVIN SAMI TREASURER 0.00 X X 0 0 0 HERBERT BERON SECRETARY 0.00 X X 0 0 0 DAVID APPLE DIRECTOR (FROM APR. 2023) 0.00 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 (UNTIL DEC. 2023) 0.00 X 0 0 0 GARY GASPER 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 (UNTIL AUG. 2023) 0.00 X 0 0 0 JONATHAN PASTOR DIRECTOR 0.00 X 0 0 0 PHYLLIS SANDERS DIRECTOR 0.00 X 0 0 0 DR STEVEN SCHERER DIRECTOR 0.00 X 0 0 0 DR MICHAEL SHY DIRECTOR 0.00 X 0 0 0 DR JOHN SVAREN DIRECTOR 0.00 X 0 0 0 CRAIG ZELTSAR DIRECTOR 0.00 X 0 0 0 SUZANNE BRUHN CHIEF EXECUTIVE OFFICER (FROM 11/2023) 40.00 X 47307 0 1749 AMY GRAY CHIEF EXECUTIVE OFFICER (TIL 03/2023) 40.00 X 149038 0 2346 KIMBERLY MAGEE DIRECTOR OF FINANCE AND ADMIN 40.00 X 99375 0 3659 KATHERINE FORSEY CHIEF RESEARCH OFFICER 40.00 X 113555 0 7239 LAUREL RICHARDSON DIRECTOR OF COMMUNITY OUTREACH 40.00 X 102375 0 3774 JEANA SWEENEY CHIEF ENGAGEMENT AND GIFT OFFICER 40.00 X 212500 0 7262 724150 0 26029 4 0 1 0 HUMANFIRST THERAPEUTICS 9600 DEWITT DRIVE SUITE 1 SILVER SPRING MD 20910 RESEARCH CONSULTANT 415648 1 155297 4201875 145147 4357172 PROGRAM SERVICE REVENUE 900099 1308834 1308834 1308834 45563 45563 5811389 5779080 32309 32309 32309 86933 155297 86933 0 OTHER REVENUE 900099 17630 17630 17630 5761508 1308834 0 95502 X 2776496 2776496 42500 42500 144564 144564 303474 160916 81863 60695 697289 617217 14351 65721 16122 14104 162 1856 11303 10841 169 293 88974 72382 7590 9002 50799 37755 13044 30300 30300 936158 724624 137122 74412 120444 100308 10022 10114 233465 169561 23360 40544 88271 69173 8228 10870 187597 109058 72862 5677 CAMP FEES 303956 303956 EVENT COSTS 241825 231705 10120 MISCELLANEOUS 18429 18114 315 6291966 5633574 369088 289304 7382998 908308 2478025 8457711 199999 9861023 9566018 0 0 X 5412200 6460062 4448823 3105956 9861023 9566018 9861023 9566018 -530458 235453 0 X X 0 1 X 1 0 X 4695526 5201933 5161270 8795013 4299419 28153161 1581813 1308834 2890647 4695526 5201933 5161270 10376826 5608253 31043808 484980 1221523 509845 5326034 1682601 9224983 355637 825809 879557 2061003 840617 1221523 509845 6151843 2562158 11285986 19757822 42833 24592 9495 16571 43146 136637 42833 24592 9495 16571 43146 136637 188896 83315 116260 122269 104563 615303 4927255 5309840 5287025 10515666 5755962 31795748 0.62140 0.61910 0.00430 0.00390 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2019 AMOUNT: $ 13,357. 2020 AMOUNT: $ 6,691. 2022 AMOUNT: $ 6,216. 2023 AMOUNT: $ 17,630. FUNDRAISING REVENUE - 2019 AMOUNT: $ 175,539. 2020 AMOUNT: $ 76,624. 2021 AMOUNT: $ 116,260. 2022 AMOUNT: $ 116,053. 2023 AMOUNT: $ 86,933. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30300 30300 5846500 5876800 443840 110960 0 0 337394 382819 463165 443840 1627218 2440827 30000 30300 30000 30300 120600 84349 95705 115791 110960 406805 610208 0 X 6083894 235453 235453 5848441 -86933 -86933 5761508 6378899 86933 86933 6291966 0 6291966 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 -86,933. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES 86,933. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANT MAKING RESEARCH GRANTS 111094 NORTH AMERICA 0 0 GRANT MAKING RESEARCH GRANTS 33470 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 FUNDRAISING NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 FUNDRAISING 0 0 0 0 0 0 144564 0 144564 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 49444 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 25000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 16650 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 20000 WIRE TRANSFER 0 NORTH AMERICA CMT RESEARCH 33470 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. CYCLE 4 CMT 124884 70961 53923 53923 KENTUCKY DERBY PARTY 65303 32293 33010 33010 2 52043 52043 242230 155297 86933 86933 86933 0 1 BRAINXELL 455 SCIENCE DRIVE MADISON WI 53711 31900 0 CMT RESEARCH CHARLES RIVER LABORATORIES 251 BALLARDVALE ST WILMINGTON MA 01887 061397316 98480 0 CMT RESEARCH CLEVELAND CLINICLERNER RESEARCH INST PO BOX 931652 CLEVELAND OH 44193 912153073 501(C)(3) 49902 0 CMT RESEARCH ENVIGO 3565 PAYSPHERE CIRCLE CHICAGO IL 60674 841753840 35079 0 CMT RESEARCH JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 102115130 501(C)(3) 81228 0 CMT RESEARCH NEW YORK STEM CELL FOUNDATION INC 619 W 54TH STREET NEW YORK NY 10019 202905531 501(C)(3) 35675 0 CMT RESEARCH OHIO STATE UNIVERSITY 1960 KENNY RD COLUMBUS OH 43210 316025986 501(C)(3) 64009 0 CMT RESEARCH PSYCHOGENICS INC 257 PARK AVE S 7TH FL NEW YORK NY 10010 942963168 1371077 0 CMT RESEARCH RESEARCH FOUNDATION FOR STATE UNIV OF NY PO BOX 9 ALBANY NY 12201 141368361 501(C)(3) 51193 0 CMT RESEARCH UCSF PO BOX 748872 LOS ANGELAS CA 90074 946036493 501(C)(3) 126853 0 CMT RESEARCH UNIV OF IOWA-CARVER 200 HAWKINS DR 2007 RCF IOWA CITY IA 52242 426004813 501(C)(3) 643418 0 CMT RESEARCH UNIV OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 125004 0 CMT RESEARCH UNIV OF WISCONSIN-MADISON 21 N PARK ST STE 6401 MADISON WI 53715 396006492 501(C)(3) 13684 0 CMT RESEARCH UT SOUTHWESTERN MEDICAL CENTER PO BOX 841765 DALLAS TX 75284 756002868 501(C)(3) 41250 0 CMT RESEARCH 10 4 PATIENT SUPPORT FUND 7 26000 HONORARIUMS 12 16500 PART I, LINE 2: CMTA REQUIRES BY CONTRACT PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. IT'S CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. X 1 0 0 0 0 0 0 0 0 JEANA SWEENEY CHIEF ENGAGEMENT AND GIFT OFFICER 122500 0 90000 0 0 0 6400 0 862 0 219762 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER (TIL 03/2023 149038 0 0 0 0 0 1307 0 1039 0 151384 0 0 0 PART I, LINE 4A SCHEDULE J, PART I, LINE 4A: AMY GRAY (CHIEF EXECUTIVE OFFICER UNTIL MARCH 2023) RECEIVE SEVERANCE PAY IN 2023 TOTALING $105,769. X 145147 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 IX, LINE 11G OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 724,624. MANAGEMENT AND GENERAL EXPENSES 137,122. FUNDRAISING EXPENSES 74,412. TOTAL EXPENSES 936,158. 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.