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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

Leadership
Rabi Tawil, MD, Principal Investigator
Johanna Hamel, MD, Co-Investigator
Charles Thornton, MD, Co-Investigator
Michael McDermott, PhD, Biostatistician

Team

Bill Martens, Data Manager
Eileen Eastwood, Information Analyst

James Hilbert, MS, Research Coordinator
Elizabeth Luebbe, MS, Research Coordinator

Kathy Knab, Research Secretary

Tracy Forrester, Information Analyst

Registry Team

Photo (from left to right): Elizabeth Luebbe, Bill Martens, Eileen Eastwood, James Hilbert, and Dr. Richard T. Moxley, III.

Founder

Richard Moxley, III, MD, Professor Emeritus; Principal Investigator of Registry from September 2000 to June 2017

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; Houston Methodist
Richard Barohn, MD, University of Missouri
Paula Clemens, MD, University of Pittsburgh
Michael Conneally, PhD, Indiana University, Advisor: 2000-2005
John Day, MD, Stanford University
Denise Figlewicz, PhD, Wayne State University
Jacqueline M. Jackson, Indiana University, Advisor: 2000-2010
John Kissel, MD, retired, Ohio State University
In Memoriam, Shannon Lord (1946-2013), Hunter Ford
Katherine Mathews, MD, University of Iowa
Don Sanders, MD, Duke University
Stephen Tapscott, MD, PhD, University of Washington