2024-11-14T14:35:04-08:00 2023-12-31 262363334 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 95661 990 2023-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 TANYA STEVENSON CEO 2024-11-14 true true K JEFFREY DE LYSER CPA P00022269 9167512900 2023 2024-10-15 13:58:12Z TANYA STEVENSON 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 2737884 false X WWW.MYOTONIC.ORG X 2006 CA To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. 12 12 10 90 0 2774635 2324783 66768 82999 4672 183627 -72040 -142929 2774035 2448480 1048270 701687 0 646166 979808 0 210240 811709 2109633 2506145 3791128 267890 -1342648 6830491 5467413 1488211 1465481 5342280 4001932 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 1205823 701687 82999 Education - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals. 1138608 Research - We raise additional funds in the private sector in order to accelerate further understanding of the disease through research. MDF supports both clinical and scientific research with a goal of finding a treatment and eventually a cure for this chronic, degenerative disease. 382109 Advocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support. 2726540 true true false false false false false false false false false false false false true false false true false false false false false false true false false true false true false false false false false false false false false false false false false true true false false false true 21 0 false 10 true false true OC false false false false false 0 false false false false false false false X 12 12 false false false false false false false true true false false true true true true true true true true false CA X TANYA STEVENSON 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 TANYA STEVENSON CEO 60.00 0.00 X 240871 0 23477 KLEED CUMMING COMM/TECH MANAGER 40.00 0.00 131861 0 942 CATHERINE BECK PROJECTS MANAGER 40.00 0.00 126798 0 2397 MINDY BUCHANAN DIR. OF PROGRAMS 40.00 0.00 108620 0 2301 JEREMY KELLY CHAIR 5.00 0.00 X X 0 0 0 MARTHA MONTAG BROWN VICE-CHAIR 5.00 0.00 X X 0 0 0 ELIZABETH FLORENCE Secretary 5.00 0.00 X X 0 0 0 DAVID HERBERT Treasurer 5.00 0.00 X X 0 0 0 DAVID BERMAN Director 1.00 0.00 X 0 0 0 JOHN W DAY Director 1.00 0.00 X 0 0 0 CHARLES THORNTON Director 1.00 0.00 X 0 0 0 JOHN FITZPATRICK Director 1.00 0.00 X 0 0 0 JOEL REVILL Director 1.00 0.00 X 0 0 0 TOM McPeek Director 1.00 0.00 X 0 0 0 BELEN ESPARIS Director 2.00 0.00 X 0 0 0 HALEY MARTINELLI Director 1.00 0.00 X 0 0 0 608150 29117 4 false true false 0 1411186 913597 325 2324783 Conference Registration 624100 82999 82999 82999 119090 119090 0 0 0 211012 146475 64537 64537 64537 1411186 142929 -142929 -142929 0 0 0 2448480 82999 40698 X 701687 701687 0 0 0 264348 222105 18452 23791 0 590992 496551 41251 53190 0 61399 51587 4286 5526 63069 52991 4402 5676 0 0 19995 14853 2189 2953 0 0 0 517285 384254 56638 76393 0 0 40512 30093 4436 5983 0 28805 23409 2887 2509 0 0 745148 690513 49184 5451 0 0 0 4274 2056 1085 1133 UNCOLLECTIBLE ACCOUNTS 644784 10000 632731 2053 ADMINISTRATION 64461 31013 16365 17083 Postage and Shipping 17405 8373 4419 4613 Printing and Publications 14664 7055 3723 3886 12300 12300 3791128 2726540 854348 210240 370582 391111 2606142 4755236 794128 200990 0 0 0 0 0 14073 14073 0 3012396 46548 0 0 0 33170 59455 6830491 5467413 65774 104573 1388750 1300000 33687 60908 1488211 1465481 X 4630121 3939773 712159 62159 5342280 4001932 6830491 5467413 -1342648 2300 X false true X true false X 1671220 1987042 2409559 2774635 232483 9074939 75663 26106 23300 66768 82999 274836 0 0 0 1746883 2013148 2432859 2841403 315482 9349775 150957 142138 295682 270809 143459 1003045 0 150957 142138 295682 270809 143459 1003045 8346730 16560 6329 269 4672 119090 146920 0 16560 6329 269 4672 119090 146920 507010 -71671 -49510 -98290 -145229 142310 0 2270453 1947806 2383618 2747785 289343 9639005 0.86590 0.88550 0.01520 0.00310 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED OPERATING LEASE LIABILITY 60908 60908 2648540 2300 197760 200060 2448480 2448480 3953764 162636 162636 3791128 3791128 Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 AFFILIATE'S REVENUE ON CONSOLIDATED F/S $52531 SPECIAL EVENTS EXPENSES $145229 Part XII, Line 2d: Other expenses and losses per audited F/S AFFILIATE'S EXPENSES ON CONSOLIDATED F/S $17407 SPECIAL EVENTS EXPENSES $145229 false GALA 1411186 1411186 142929 1411186 1411186 142929 142929 -142929 true EMORY UNIVERSITY 1599 CLIFTON ROAD NE ATLANTA GA 30322 580566256 501(C)(3) 55000 0 RESEARCH STANFORD SCHOOL OF MEDICINE 269 CAMPUS DRIVE WEST STANFORD CA 94305 941156365 501(C)(3) 190000 0 RESEARCH UNIVERISTY OF ROCHESTER 601 ELMWOOD AVENUE ROCHESTER NY 14642 160743209 501(C)(3) 245000 0 RESEARCH UNIVERSITY OF FLORIDA 2033 MOWRY ROAD GAINESVILLE FL 32610 590974739 501(C)(3) 55000 0 RESEARCH UNIVERSITY OF MISSOURI 601 TURNER AVENUE COLUMBIA MO 65211 436003859 501(C)(3) 50000 0 RESEARCH UNIVERSITY OF NEVADA 4505 MARYLAND PARKWAY LAS VEGAS NV 89154 886000024 501(C)(3) 50000 0 RESEARCH VIRGINIA COMMONWEALTH UNIVERS 921 W FRANKLIN STREET RICHMOND VA 23284 546001758 501(C)(3) 55000 0 RESEARCH 7 0 Grantmaker's Description of How Grants are Used WHEN A GRANT IS AWARDED THERE ARE SUBSTANTIAL AND REGULAR INTERACTIONS BETWEEN GRANTEES AND THE MDF APPOINTED PROJECT ADVISORY COMMITTEE. THE ADVISORY COMMITTEE PROVIDES OVERSIGHT AND GUIDANCE OF FUNDED PROJECTS.WHEN A FELLOWSHIP IS AWARDED EACH RECIPIENT MUST SUBMIT TWO PROGRESS REPORTS DURING THE COURSE OF THE TWO-YEAR FELLOWSHIP. EACH RECIPIENT MUST ALSO SUBMIT EXPENSE REPORTS DURING THE COURSE OF THE TWO-YEAR FELLOWSHIP. false false false false false false false false false TANYA STEVENSON CEO 240871 22500 977 264348 Form 990, Part VI, Section B, Line 11b THE BOARD IS PROVIDED A COPY OF THE TAX RETURN FOR REVIEW PRIOR TO BEING FINALIZED. Form 990, Part VI, Section B, Line 12c THE EXECUTIVE COMMITTEE MONITORS AND ENFORCES COMPLIANCE WITH THE POLICY. THE EXECUTIVE COMMITTEE HAS A FORUM TO RAISE AND ADDRESS ANY POTENTIAL CONFLICTS OF INTEREST AND/OR ANSWER ANY QUESTIONS. MDF MAKES SURE ALL DECISIONS/ACTIONS ARE CLEAR OF CONFLICTS DURING REGULARLY SCHEDULED MEETINGS. Form 990, Part VI, Section B, Line 15a AN INDEPENDENT EMPLOYMENT SEARCH FIRM IS USED ON A CONSULTING BASIS TO PERFORM A MARKET ANALYSIS OF SALARIES AND OTHER COMPENSATION.FOLLOWING THAT ANALYSIS, THE CEO SALARY IS REVIEWED AND APPROVED BY BOTH THE EXECUTIVE COMMITTEE AND THE FULL BOARD. Form 990, Part VI, Section C, Line 19 AVAILABLE UPON REQUEST. MDF UK 10 QUEEN STREET PLACE LONDON ECR UK 1BE QUALITY OF LIFE OF PEOPLE WITH DM UK MYOTONIC DYSTROPHY FOUNDATION INC true false false false false false false false false false false false false false false false false false false false