2022-09-16T12:54:58-07:00 2021-12-31 262363334 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 95661 990 2021-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 TANYA STEVENSON CEO 2022-09-16 true TANYA STEVENSON 999009999 K JEFFREY DE LYSER CPA P00022269 9167512900 2 AAL1 IAL1 FAL1 2021 2022-09-23 18:48:47Z TANYA STEVENSON 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 2433128 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. 10 10 5 90 0 1987042 2409559 26106 23300 6329 269 -71671 -49510 1947806 2383618 117329 553570 0 573340 605089 0 58658 434110 331866 1124779 1490525 823027 893093 4489179 5846076 322658 786638 4166521 5059438 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 791279 553570 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. 358221 23300 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. 143623 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. 1293123 true true false false false false false false false false false false false false false 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 true false false true 12 0 false 5 true false true OC false false false false false 0 false false false false false false false X 10 10 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 216761 0 20245 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 216761 20245 1 false true false 0 951839 82700 1375020 2409559 Conference Registration 624100 23300 23300 23300 269 269 0 0 0 0 951839 49510 -49510 -49510 0 0 0 2383618 23300 -49241 X 553570 553570 0 0 0 237006 181225 37687 18094 0 313624 239811 49870 23943 0 16898 12921 2687 1290 37561 28720 5973 2868 0 0 17475 12973 2006 2496 0 0 0 190915 161330 24937 4648 0 0 662 491 76 95 0 24605 21071 1587 1947 0 0 35844 35844 0 0 0 7696 4292 1323 2081 ADMINISTRATION 40702 31113 9589 Printing and Publications 9614 6629 2043 942 Postage and Shipping 4353 3133 966 254 0 1490525 1293123 138744 58658 321288 349365 3425079 4543350 687525 903607 0 0 0 0 0 55287 49754 0 0 0 0 0 0 4489179 5846076 38113 64138 284545 722500 322658 786638 X 3449101 4347279 717420 712159 4166521 5059438 4489179 5846076 893093 -176 X false true X true false X 3016393 2080997 1671220 1987042 2409559 11165211 205789 68225 75663 26106 23300 399083 0 0 0 3222182 2149222 1746883 2013148 2432859 11564294 148428 111543 150957 142138 295682 848748 0 148428 111543 150957 142138 295682 848748 10715546 3092 8449 16560 6329 269 34699 0 3092 8449 16560 6329 269 34699 12582 25957 507010 -71671 -49510 424368 0 3237856 2183628 2270453 1947806 2383618 12023361 0.89120 0.90010 0.00290 0.00320 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2579047 -176 195605 195429 2383618 2383618 1550270 59745 59745 1490525 1490525 Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 AFFILIATE'S REVENUE ON CONSOLIDATED F/S $146095 SPECIAL EVENTS EXPENSES $49510 Part XII, Line 2d: Other expenses and losses per audited F/S AFFILIATE'S EXPENSES ON CONSOLIDATED F/S $10235 SPECIAL EVENTS EXPENSES $49510 false GALA 951839 951839 49510 951839 951839 49510 49510 -49510 true BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 105000 0 RESEARCH FELLOWSHIP MASSACHUSETTS GENERAL HOSP 55 Fruit Street Boston MA 02114 041564655 501(C)(3) 105000 0 RESEARCH UNIVERISTY OF ROCHESTER 601 ELMWOOD AVENUE ROCHESTER NY 14642 160743209 501(C)(3) 160000 0 RESEARCH UNIVERSITY OF FLORIDA 89 STADIUM ROAD GAINESVILLE FL 32611 590974739 501(C)(3) 83494 0 RESEARCH UNIVERSITY OF NOTTINGHAM UNIVERSITY PARK NOTTINGHAM UK NG7 2RD GB 690 391 225 55000 0 RESEARCH UNVERSITY AT ALBANY 1400 WASHINGTON AVENUE ALBANY NY 12222 161514621 501(C)(3) 55000 0 RESEARCH 5 1 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 216761 19500 745 237006 Form 990, Part VI, Line 11b: Form 990 Review Process THE BOARD IS PROVIDED A COPY OF THE TAX RETURN FOR REVIEW PRIOR TO BEING FINALIZED. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts 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, Line 15a: Compensation Review & Approval Process - CEO, Top Management 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, Line 19: Other Organization Documents Publicly Available 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 true false false false false MDF UK o 52246 cash