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

Leadership

Richard Moxley, III, MD, Principal Investigator
Rabi Tawil, 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

Karen Richards, 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.

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

Contact Us

Registry Coordinators:
Jim Hilbert and Liz Luebbe

Toll free: (888) 925-4302
Email us

Help us make a difference!

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