Leadership, Staff, and Advisors
The National Registry is housed at the University of Rochester’s Department of Neurology, a Center of Excellence in muscular dystrophy research.
The University of Rochester has been a leader in myotonic dystrophy (DM) and FSHD research for decades and has spurred hope for effective treatments by:
- Contributing to significant progress in understanding the causes of DM and FSHD
- Developing the knowledge and infrastructure needed to prepare for treatment trials
- Continuing to search for effective new treatments using animal models
- Working with patients and care providers to reach common goals.
The National Registry Team
Bill Martens, Data Manager
Eileen Eastwood, Information Analyst
James Hilbert, MS, Research Coordinator
Elizabeth Luebbe, MS, Research Coordinator
Karen Richards, Research Secretary
Tracy Forrester, Information Analyst
Scientific Advisory Committee
The Registry's Scientific Advisory Committee includes scientists and researchers across the United States and Canada, who were instrumental in developing the Registry. This expert panel provides ongoing support in reviewing research applications submitted to use the Registry, reviews and develops standard operating procedures, and facilitates the development of presentations and manuscripts.
Tetsuo Ashizawa, MD; University of Florida
Richard Barohn, MD, University of Kansas
Paula Clemens, MD, University of Pittsburgh
Michael Conneally, PhD, Indiana University
John Day, MD, Stanford University
Denise Figlewicz, PhD, University of Western Ontario
Jacqueline M. Gray, Indiana University
John Kissel, MD, the Ohio State University
Shannon Lord (1946-2013), Patient Advocate
Katherine Mathews, MD, University of Iowa
Don Sanders, MD, Duke University
Stephen Tapscott, MD, PhD, University of Washington
Jim Hilbert and Liz Luebbe
Toll free: (888) 925-4302
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