2016-09-02T11:28:40-07:00 2015-12-31 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 956615919 990 2015-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 1004A OREILLY AVENUE SAN FRANCISCO CA 94129 MOLLY WHITE CEO 2016-09-02 true K JEFFREY DE LYSER CPA P00022269 9167512900 2015 2016-12-15 16:53:06Z 2139511 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. 8 8 7 40 0 696805 2113561 28534 24525 2186 1425 0 727525 2139511 213178 41977 0 364087 658168 0 76300 510872 649980 1088137 1350125 -360612 789386 1642464 2299688 344645 212483 1297819 2087205 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 394037 41977 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. 351251 24525 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. 341728 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. 1087016 true true false false false false false false false false false false false false false false false true false false true true false false false 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 27 0 false 7 false false false true OC false false false false false 0 false false false false false false false false false false X 8 8 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 1003B OREILLY AVENUE SAN FRANCISCO CA 94129 JEREMY KELLY Chairman 5.00 0.00 X X 0 0 0 WOODIE KESSEL VICE-CHAIRMAN 10.00 0.00 X X 0 0 0 DAVID HERBERT Treasurer 2.00 0.00 X X 0 0 0 ELIZABETH FLORENCE Secretary 1.00 0.00 X X 0 0 0 JOHN BREKKA BOARD MEMBER 1.00 0.00 X 0 0 0 JOHN FITZPATRICK BOARD MEMBER 1.00 0.00 X 0 0 0 TIM KAINE BOARD MEMBER 1.00 0.00 X 0 0 0 MELVIN KOHN BOARD MEMBER 1.00 0.00 X 0 0 0 MOLLY WHITE CEO 60.00 0.00 X 195958 0 9455 195958 9455 1 false true false 0 2113561 2113561 Conference Revenue 624100 24525 24525 24525 1425 1425 0 0 0 0 0 0 0 0 2139511 24525 1425 X 31977 31977 0 10000 10000 0 205413 176378 15281 13754 0 412389 354100 30676 27613 0 0 40366 34660 3003 2703 0 8124 8124 9800 9800 0 0 0 338492 255047 72384 11061 0 0 16023 8966 4741 2316 0 46293 38364 3666 4263 0 0 138705 125738 11734 1233 0 0 0 2318 2318 ADMINISTRATION 53584 31282 14241 8061 Printing and Publications 25624 14339 7581 3704 Postage and Shipping 11017 6165 3260 1592 0 1350125 1087016 186809 76300 15522 56962 1473876 820042 90636 961540 58900 434985 0 0 0 0 3530 26159 0 0 0 0 0 0 1642464 2299688 44645 87483 300000 125000 344645 212483 X 807054 1689900 490765 397305 1297819 2087205 1642464 2299688 789386 X false true X true false X 1602055 726874 1464729 696805 2113561 6604024 10308 16180 28534 24525 79547 0 0 0 1602055 737182 1480909 725339 2138086 6683571 0 0 6683571 307 319 1457 2186 1425 5694 0 307 319 1457 2186 1425 5694 0 0 1602362 737501 1482366 727525 2139511 6689265 0.99910 0.99910 0.00090 0.00090 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4311692 2172181 2172181 2139511 2139511 2707594 1357469 1357469 1350125 1350125 Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 AFFILIATE'S REVENUE ON CONSOLIDATED F/S $2172181 Part XII, Line 2d: Other expenses and losses per audited F/S AFFILIATE'S EXPENSES ON CONSOLIDATED F/S $1357469 true UNITED KINGDOM 0 0 ASSOCIATED ORGANIZATION ADVOCACY 10000 10000 10000 UNITED KINGDOM CHARITABLE PURPOSES 10000 CHECK 1 false false false false false false true ROCKEFELLER UNIVERSITY 1230YORK AVENUE NEW YORK NY 10065 131624158 50000 0 POST DOCTORAL SUPPORT RESEARCH PROJ SCRIPPS RESEARCH INSTITUTE 130 SCRIPPS WAY JUPITER FL 33458 330435954 50000 0 POST DOCTORAL SUPPORT RESEARCH PROJ UNIVERSITY OF ROCHESTER 518 HYLAN BLDGPO BOX 270140 ROCHESTER NY 14627 160743209 501(C)3 75000 0 CLINICAL RESEARCH WYCK FOUNDATION 10 QUEEN STREET PLACE LONDON ECR UK 1BE 10000 0 RESEARCH 2 2 Grantmaker's Description of How Grants are Used WHEN A GRANT IS RECEIVED FUNDS ARE ALLOCATED TO APPROPRIATE REVENUE AND PROGRAM ACCOUNTS WITHIN THE ACCOUNTING SOFTWARE. MDF TRACKS ALL GRANT MONEY AND HOW IT IS SPENT. ANY HIGH LEVEL GRANT REQUIREMENTS ARE DOCUMENTED AND ANY REPORTING REQUIREMENTS ARE FOLLOWED UP ON ACCORDINGLY. false false false false false false false false false false MOLLY WHITE CEO 183958 12000 9455 205413 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 HUMAN RESOURCE ORGANIZATION IS USED ON A CONSULTING BASIS TO DETERMINE THE APPROPRIATENESS OF SALARIES AND OTHER COMPENSATION.FOLLOWING THAT REVIEW, SALARIES ARE AGAIN 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 DM UK MYOTONIC DYSTROPHY FOUNDATION INC true false true true false false false false false false false false false false false false false false false false WYCK FOUNDATION b 10000 CASH WYCK FOUNDATION c 890000 CASH