Administrative Core

The Administrative Core of the MDCRC coordinates and integrates the components & activities as well as the utilization of funds by the 3 scientific projects and 2 scientific cores that comprise our MDCRC. The Administrative Core gains vitality and effectiveness from the experience of its members in performing similar responsibilities for other projects. Dr. Richard Moxley, Director of our MDCRC, and Dr. Charles Thornton, Assistant MDCRC Director, work together along with other members of our proposed MDCRC, especially Dr. Rabi Tawil, in the operation of our NIH funded National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members. Dr. Moxley Directs the Registry, Drs. Thornton and Tawil act as Co-Directors of the Registry. Mrs. Nancy Merriman, our proposed MDCRC Administrator, administers the Registry, and Mr. William Martens, our proposed MDCRC analyst/programmer, is analyst/programmer for the Registry. The activities of the Registry involve interacting with investigators, clinical coordinators, and physician offices; handling large amounts of data; and, organizing regular meetings with NIH Scientific Officers as well as meetings with the external Scientific Advisory Committee [SAC]. These are all activities we will perform in our MDCRC. The necessary communication network, knowledge of storage and confidentiality requirements, data tracking software, and computer facilities to operate a large-scale, multi-component, NIH funded, project are already in place. The proposed members of our MDCRC-SAC include some of the individuals who participate in the SAC for the Registry. We have a well-established, working relationship with them. Our two proposed lay members for the MDCRC-SAC are businesswomen from western New York State , interested in clinical and basic research, and both have worked with Dr. Moxley. One has DM1 and the other has FSHD. Dr. Robert Griggs, Chair of Neurology and Director of the Experimental Therapeutics Program, wilt serve as consultant. He brings additional experience and expertise to this Core. He will advise us concerning the organization/operation of the MDCRC and will counsel MDCRC members and other MDCRCs as to how best to utilize the assets of the Experimental Therapeutics Program and the Muscle Study Group [MSG], The Administrative Core will bring together these environmental assets with the activities of the Scientific Projects and Scientific Cores through regularly scheduled bi-weekly meetings, video-conferences, and bi-annual meetings of the MDCRC-SAC.