2021-08-02T14:26:29-07:00 2020-12-31 262363334 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 95661 990 2020-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 TANYA STEVENSON CEO 2021-08-02 true TANYA STEVENSON 999009999 K JEFFREY DE LYSER CPA P00022269 9167512900 2 AAL1 IAL1 FAL1 2020 2022-09-23 18:48:47Z TANYA STEVENSON 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 2019477 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. 9 9 4 60 0 1672633 1987042 75663 26106 16560 6329 507010 -71671 2271866 1947806 501662 117329 0 598551 573340 0 82282 1148071 434110 2248284 1124779 23582 823027 3955407 4489179 609043 322658 3346364 4166521 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 398527 26106 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. 364004 117329 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. 172087 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. 934618 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 true false false false false true true true false false true 22 0 false 4 true false true OC false false false false false 0 false false false false false false false X 9 9 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 216456 0 16212 KLEED CUMMING COMMS. & TECH MNGR 40.00 0.00 101656 0 852 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 318112 17064 2 false true false 0 908388 108300 970354 117380 1987042 Conference Registration 624100 26106 26106 26106 6329 6329 0 0 0 0 908388 71671 -71671 -71671 0 0 0 1947806 26106 -65342 X 117329 117329 0 0 0 232668 209402 11633 11633 0 301360 271224 15068 15068 0 5136 4622 257 257 34176 30758 1709 1709 0 3335 2465 725 145 31988 23646 6951 1391 0 0 0 252983 187011 54973 10999 0 0 5918 4375 1286 257 0 37600 33840 1880 1880 0 0 2344 1254 154 936 0 0 0 4300 2097 570 1633 ADMINISTRATION 64493 31407 8542 24544 Printing and Publications 16512 8051 2190 6271 Postage and Shipping 14637 7137 1941 5559 0 1124779 934618 107879 82282 5251 321288 2119320 3425079 791519 687525 0 0 0 0 0 22192 55287 0 1017125 0 0 0 0 0 3955407 4489179 43272 38113 565771 284545 609043 322658 X 2628944 3449101 717420 717420 3346364 4166521 3955407 4489179 823027 -2870 X false true X true false X 1551282 3016393 2080997 1671220 1987042 10306934 35347 205789 68225 75663 26106 411130 0 0 0 1586629 3222182 2149222 1746883 2013148 10718064 16500 148428 111543 150957 142138 569566 0 16500 148428 111543 150957 142138 569566 10148498 1686 3092 8449 16560 6329 36116 0 1686 3092 8449 16560 6329 36116 46667 12582 25957 507010 -71671 520545 0 1634982 3237856 2183628 2270453 1947806 11274725 0.90010 0.90750 0.00320 0.00270 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2037636 -2870 92700 89830 1947806 1947806 1411823 287044 287044 1124779 1124779 Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 INTERCOMPANY ELIMINATIONS $0 AFFILIATE'S REVENUE ON CONSOLIDATED F/S $21029 SPECIAL EVENTS EXPENSES $71671 Part XII, Line 2d: Other expenses and losses per audited F/S AFFILIATE'S EXPENSES ON CONSOLIDATED F/S $215373 INTERCOMPANY ELIMINATIONS $0 SPECIAL EVENTS EXPENSES $71671 false GALA 908388 908388 71671 908388 908388 71671 71671 -71671 true BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 55000 0 RESEARCH FELLOWSHIP UNIVERSITY OF CA SAN DIEGO 9500 GILMAN DR LA JOLLA CA 92093 956006144 501(C)(3) 55000 0 RESEARCH FELLOWSHIP VIRGINIA COMMONWEALTH UNIVERS 111 N FOURTH STREET RICHMOND VA 23219 546001758 501(C)(3) 7400 0 RESEARCH 0 3 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 216456 15600 612 232668 X 7 117380 QUOTED FMV false false false 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 THE WEEKLY CALLS. 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 MD 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 16256 ALLOCATED TIME