2019-09-20T12:49:48-07:00 2018-12-31 262363334 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 956615919 990 2018-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 1004A OREILLY AVENUE SAN FRANCISCO CA 94129 MOLLY WHITE CEO 2019-09-20 true K JEFFREY DE LYSER CPA P00022269 9167512900 2018 2019-02-21 02:37:17Z MOLLY WHITE 1004A OREILLY AVENUE SAN FRANCISCO CA 94129 2307597 false 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 11 15 0 3016393 2080997 205789 68225 3092 8449 12582 25957 3237856 2183628 72185 386847 0 793161 741161 0 267666 1133611 893668 1998957 2021676 1238899 161952 3288895 3794207 129242 471821 3159653 3322386 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 729658 386847 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. 525135 68225 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. 321728 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. 1576521 true true false false false false false false false false false false false false false false false true false false false true false false true false false true false true false false false false false false false false false false false false false false false false true true true false false true 19 0 false 11 true false false true OC false false false false false 0 false false false false false 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 MOLLY WHITE 4158007745 1004A OREILLY AVENUE SAN FRANCISCO CA 94129 WOODY KESSEL Chairman 5.00 0.00 X X 0 0 0 MARSHA DUGAN VICE-CHAIRMAN 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 BREKKA Director 1.00 0.00 X 0 0 0 MARTHA MONTAG BROWN 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 TODD STONE Director 1.00 0.00 X 0 0 0 MOLLY WHITE CEO 60.00 0.00 X 201660 0 4160 201660 4160 1 false true false 0 390612 1690385 2080997 Conference Revenue 624100 68225 68225 68225 8449 8449 0 0 0 0 149926 390612 123969 25957 25957 0 0 0 2183628 68225 34406 X 356847 356847 0 30000 30000 0 205820 164647 12349 28824 0 447736 358171 26864 62701 0 35547 28436 2133 4978 52058 41644 3124 7290 0 6362 4881 1000 481 25335 19436 3984 1915 0 0 0 337948 259256 53145 25547 0 0 13834 10612 2176 1046 0 54094 43192 3343 7559 0 0 332086 220048 16694 95344 0 0 0 3918 1244 1664 1010 ADMINISTRATION 88535 28093 37609 22833 Printing and Publications 22798 7235 9684 5879 Postage and Shipping 8758 2779 3720 2259 0 2021676 1576521 177489 267666 14438 28229 2174747 1751342 1079950 992232 0 0 0 0 0 19760 21697 0 1000707 0 0 0 0 3288895 3794207 78242 112551 51000 359270 129242 471821 X 2088666 2353564 1070987 968822 3159653 3322386 3288895 3794207 161952 781 X false true X true false X 696805 2113561 1551282 3016393 2080997 9459038 28534 24525 35347 205789 68225 362420 0 0 0 725339 2138086 1586629 3222182 2149222 9821458 0 0 9821458 2186 1425 1686 3092 8449 16838 0 2186 1425 1686 3092 8449 16838 46667 12582 58857 118106 0 727525 2139511 1634982 3237856 2216528 9956402 0.98640 0.99250 0.00170 0.00110 X 1950661 781 -324817 -324036 2274697 -91069 -91069 2183628 2116526 94850 94850 2021676 2021676 Part XII, Line 2d: Other expenses and losses per audited F/S AFFILIATE'S EXPENSES ON CONSOLIDATED F/S $511881 INTERCOMPANY ELIMINATIONS $-508100 SPECIAL EVENTS EXPENSES $91069 SWEDEN RESEARCH CONFERENCE 30000 WIRE TRANSFE 1 false false false false false false Part II, Line 1 - Method of Accounting ACCRUAL false GALA AND RALLY 540538 390612 149926 123969 540538 390612 149926 123969 123969 25957 true SCRIPPS RESEARCH INSTITUTE 10550 N TORREY PINES RD LA JOLLA CA 92037 330435954 105000 0 RESEARCH GRANT THE JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 010211513 199270 0 RESEARCH GRANT UNIVERSITY OF FLORIDA 207 GRINTER HALL PO BOX 11550 GAINESVILLE FL 32611 596002052 65000 0 RESEARCH/ MEDICAL EDUCATION 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 false MOLLY WHITE CEO 195000 6660 4160 205820 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. WYCK FOUNDATION 10 QUEEN STREET PLACE LONDON ECR UK 1BE QUALITY OF LIFE OF PEOPLE WITH MD UK MYOTONIC DYSTROPHY FOUNDATION INC true false false true false false false false false false false false false false false false false false false false WYCK FOUNDATION c 508100 CASH