2025-11-04T13:54:53-08:00 2024-12-31 262363334 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 95661 990 2024-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 TANYA STEVENSON CEO 2025-11-04 true true K JEFFREY DE LYSER CPA P00022269 9167512900 2024 2025-03-06 01:10:19Z TANYA STEVENSON 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 3923920 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 14 90 0 2324783 3637697 82999 1624 183627 199813 -142929 -179339 2448480 3659795 701687 1008046 0 979808 1572229 0 256324 2109633 1173758 3791128 3754033 -1342648 -94238 5467413 5826049 1465481 1917906 4001932 3908143 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 1664747 1008046 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. 1289926 1624 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. 338956 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. 3293629 true true false false false false false false false false false false false false true false false true false false true true 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 22 0 false 14 true false true UK 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 247799 0 9258 ANDREAS ROHRWASSER CHIEF SCI. OFFICER 40.00 0.00 197755 0 7800 KLEED CUMMING COMM/TECH MANAGER 40.00 0.00 131723 0 4944 MINDY BUCHANAN DIR. OF PROGRAMS 40.00 0.00 127061 0 0 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 ROBERT CAMPAGNA Director 1.00 0.00 X 0 0 0 ANDREW BERGLUND Director 1.00 0.00 X 0 0 0 TOM McPeek Director 1.00 0.00 X 0 0 0 BELEN ESPARIS Director 1.00 0.00 X 0 0 0 HALEY MARTINELLI Director 1.00 0.00 X 0 0 0 704338 22002 4 false true false 0 1841488 483385 1312824 3637697 Conference Registration 624100 1624 1624 1624 199860 199860 0 0 0 84739 84786 -47 -47 -47 1841488 179339 -179339 -179339 0 0 0 3659795 1624 20474 849721 849721 0 158325 158325 0 257057 208539 11069 37449 0 1136135 921693 48924 165518 0 78721 63863 3390 11468 100316 81381 4320 14615 0 0 17280 13195 3017 1068 0 0 0 303840 236428 65115 2297 0 0 27824 21246 4858 1720 0 33582 29394 203 3985 0 0 551463 509846 28162 13455 0 0 0 4550 3314 580 656 ADMINISTRATION 201573 168725 29521 3327 Printing and Publications 28112 23531 4117 464 Postage and Shipping 5290 4428 775 87 MISCELLANEOUS 244 29 215 0 3754033 3293629 204080 256324 391111 441253 4755236 5161089 200990 9623 0 0 0 0 0 14073 179585 0 46548 0 0 0 0 59455 34499 5467413 5826049 104573 138292 1300000 1671999 72058 60908 35557 1465481 1917906 X 3939773 3908143 62159 4001932 3908143 5467413 5826049 -94238 450 -1 X false true X true false X 1987042 2409559 2774635 2324783 3637697 13133716 26106 23300 66768 82999 1624 200797 0 0 0 2013148 2432859 2841403 2407782 3639321 13334513 142138 295682 270809 143459 220560 1072648 0 142138 295682 270809 143459 220560 1072648 12261865 6329 269 4672 119090 199860 330220 0 6329 269 4672 119090 199860 330220 -71671 -49510 -98290 -142929 -179339 -541739 0 1947806 2383618 2747785 2383943 3659842 13122994 0.93440 0.86590 0.02520 0.01520 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED OPERATING LEASE LIABILITY 35557 35557 3839584 450 179339 179789 3659795 3659795 3933372 179339 179339 3754033 3754033 Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 SPECIAL EVENTS EXPENSES $179339 Part XII, Line 2d: Other expenses and losses per audited F/S SPECIAL EVENTS EXPENSES $179339 true EUROPE RESEARCH 50000 WIRE TRANSFE FMV EUROPE RESEARCH 50000 WIRE TRANSFE FMV EUROPE RESEARCH 55000 WIRE TRANSFE FMV NORTH AMERICA RESEARCH 3325 WIRE TRANSFE FMV 2 2 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US 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. Part II, Line 1 - Method of Accounting ACCRUAL METHOD OF ACCOUNTING false GALA 1841488 1841488 179339 1841488 1841488 179339 179339 -179339 true MASSACHUSETTS GENERAL 55 FRUIT STREET BOSTON MA 02114 041564655 501(C)(3) 50000 0 RESEARCH UNIVERSITY OF FLORIDA 2033 MOWRY ROAD GAINESVILLE FL 32610 596002052 501(C)(3) 105000 0 RESEARCH UNIVERSITY OF ILLINOIS 506 S WRIGHT ST URBANA IL 61801 376000511 501(C)(3) 105000 0 RESEARCH UNIVERSITY OF NEVADA 4505 MARYLAND PARKWAY LAS VEGAS NV 89154 886000024 501(C)(3) 145000 0 RESEARCH UNIVERSITY OF UTAH 201 S PRESIDENTS CIRCLE SALT LAKE CITY UT 84112 876000525 501(C)(3) 190000 0 RESEARCH UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE SEATTLE WA 98105 916001537 501(C)(3) 50000 0 RESEARCH UNVERSITY OF ALBANY 1400 WASHINGTON AVENUE ALBANY NY 12222 141368361 501(C)(3) 105000 0 RESEARCH VIRGINIA COMMONWEALTH UNIVERS 921 W FRANKLIN STREET RICHMOND VA 23284 546001758 501(C)(3) 42600 0 RESEARCH WAKE FOREST UNIVERSITY 575 N PATTERSON AVE STE 530 WINSTONSALEM NC 27101 223849199 501(C)(3) 55000 0 9 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 ANDREAS ROHRWASSER CHIEF SCI. OFFICER 197755 7800 205555 TANYA STEVENSON CEO 247799 9258 257057 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 true MDF UK s 483385 Cash