DYSTONIA MEDICAL RESEARCH FOUNDATION
ONE EAST WACKER DRIVE 1730, CHICAGO, IL 606011905 www.dystonia-foundation.org

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Organizations Filed Purposes: THE FOUNDATION HAS THREE MAIN PURPOSES: (1)TO ADVANCE DYSTONIA RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR ALL FORMS OF DYSTONIA; (2)TO PROMOTE DYSTONIA AWARENESS BY SPONSORING WORKSHOPS AND SYMPOSIUMS FOR MEDICAL PROFESSIONALS AND PATIENTS, BY EDUCATING MEMBERS OF CONGRESS ABOUT DYSTONIA AND THE NEEDS OF THE DYSTONIA COMMUNITY, BY ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3)TO SPONSOR DYSTONIA PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND PROMOTION OF VIRTUAL EDUCATION MEETINGS AND ELECTRONIC SOCIAL NETWORKS FOR DYSTONIA-AFFECTED PERSONS WHO ARE UNABLE TO ATTEND MEETINGS AND FORUMS.

THE MISSION OF THE DMRF IS TO ADVANCE RESEARCH FOR MORE EFFECTIVE TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA, TO PROMOTE AWARENESS AND EDUCATION AND TO SUPPORT THE WELL BEING OF DYSTONIA AFFECTED INDIVIDUALS AND FAMILIES.

SCIENCE-INCLUDES:ISSUING 5 REQUESTS FOR APPLICATIONS FOR SCIENTIFIC RESEARCH, MANAGING THE PEER REVIEW PROCESS OF 51 SUBMITTED GRANT RESEARCH FELLOWSHIP AND CLINICAL FELLOWSHIP APPLICATIONS, SELECTING, FUNDING AND MANAGING 9 RESEARCH GRANTS, 4 RESEARCH FELLOWSHIPS, 1 CLINICAL FELLOWSHIPS, AND 4 RESEARCH CONTRACTS, ALL AIMED AT CREATING A BETTER UNDERSTANDING OF THE PATHOPHYSIOLOGY OF DYSTONIA, IDENTIFYING GENES, AND DEVELOPING IMPROVED TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA;MEETING WITH PHARMACOLOGICAL AND BIOTECH COMPANIES TO ENGAGE THEM IN THE DEVELOPMENTOF TREATMENTS FOR DYSTONIA;FINALIZING PLANS FOR THE SAMUEL BELZBERG INTERNATIONAL DYSTONIA SYMPOSIUM.CONTINUED FUNDING OF A CLINICAL FELLOWSHIP PROGRAM DESIGNED TO SUPPORT TRAINING OF PHYSICIANS IN PREPARATION FOR A CLINICAL AND/OR RESEARCH CAREER IN MOVEMENT DISORDERS WITH SPECIAL FOCUS ON DYSTONIA;SPONSORING AND PARTICIPATING IN DOMESTIC AND INTERNATIONAL SCIENTIFIC MEETINGS INCLUDING 7TH BIENNIEL WORKSHOP ON DYSTONIA, INTERNATIONAL TOXIN ASSOCIATION CONGRESS, AND TYLER'S HOPE THINK TANK; NINDS PLANNING COMMITTEE FOR NONPROFIT FORUM;REVIEWING CURRENT RESEARCH DATA AND EXPLORING STUDIES NEEDED TO ACCELERATE IMPROVED TREATMENTS;SUPPORTING AND MAINTAINING THE AVAILABILITY OF RESOURCES TO ACCELERATE DYSTONIA RESEARCH GLOBALLY SUCH AS THE DYSTONIA BRAIN COLLECTIVE AND GLOBAL DYSTONIA REGISTRY FOR USE BY THE INTERNATIONAL DYSTONIA COMMUNITY;SERVING ITS TENTH YEAR WITH NO COMPENSATION AS THE ADMINISTRATIVE CENTER FOR THE DYSTONIA COALITION WHICH is a collaboration of medical researchers and patient advocacy groups supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. The goal of the Coalition is to advance the pace of clinical and translational research into dystonia to find better treatments and a cure. The objectives of the Coalition are to develop a fuller understanding of the many different features of dystonia and how they change over the years, to develop validated diagnostic strategies and rating tools for diagnosis and monitoring patients in clinical trials, to establish a biorepository where samples of blood and other materials can be stored and distributed for research, to catalyze clinical trials for promising new treatments and to promote education and awareness. THE DMRF WAS RESPONSIBLE FOR MANAGING $420,094 RESTRICTED FOR DYSTONIA COALITION WORK NOT INCLUDED IN THE FOUNDATION'S REVENUES AND EXPENSES.Finalizing plans for the Samuel Belzberg International Dystonia Symposium.

MEMBERSHIP AND SUPPORT-INCLUDES:PLANNING AND SUPPORTING SEVEN PATIENT SYMPOSIA AND COMMUNITY FORUMS ATTENDED BY PATIENTS AND THEIR FAMILIES WHICH PROVIDE INFORMATION ABOUT CURRENT RESEARCH AND TREATMENT OPTIONS AND AN OPPORTUNITY TO DEVELOP PERSONAL NETWORKS AND REDUCE ISOLATION FOR THOSE AFFECTED BY DYSTONIA;CREATING VIRTUAL EDUCATIONAL FORUMS FOR DYSTONIA-AFFECTED PERSONS AND THEIR FAMILIES WHO ARE UNABLE TO ATTEND MEETINGS AND FORUMS; PROMOTING SUPPORT RESOURCES TO AID IN DISEASE MANAGEMENT AND QUALITY OF LIFE SUCH AS A NETWORK OF SUPPORT GROUPS AND AN ELECTRONIC SOCIAL NETWORK, INCLUDING BULLETIN BOARDS AND TELEPHONE COMMUNICATIONS WITH INDIVIDUALS AFFECTED BY DYSTONIA AND OTHER INTERESTED PARTIES;DEVELOPING 64 SUPPORT GROUPS AND FORUMS IN COMMUNITIES ACROSS THE COUNTRY AS AN ENDURING RESOURCE FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES; PROVIDING ONGOING LEADERSHIP TRAINING FOR VOLUNTEER SUPPORT LEADERS BY CREATING ELECTRONIC FORUMS FOR LEADERS TO SHARE EXPERIENCES AND PROVIDE PEER SUPPORT, PROVIDING WEBINAR TRAINING AND ONGOING SUPPORT FOR SUPPORT LEADERS, AND DISTRIBUTING A SUPPORT GROUP MANUAL WHICH PROVIDES VALUBLE INFORMATION AND RESOURCES FOR EFFECTIVE SUPPORT LEADERSHIP;AND PROVIDING MEETING MANAGEMENT SUPPORT SUCH AS EMAIL AND POSTAL NOTIFICATIONS AND A WEB-BASED CALENDAR ABOUT UPCOMING SUPPORT GROUP MEETINGS INCLUDING SUPPLYING DYSTONIA BROCHURES TO ALL SUPPORT GROUPS.

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