Meeting of Wellstone Centers
May 15, 2008
On May 12-14, MDF board members John Brekka and Shannon Lord attended the annual meeting of the six NIH-designated Centers of Excellence in Muscular Dystrophy held this year at the University of Rochester. The URMC neuromuscular center --- under the outstanding leadership of Drs. Richard Moxley and Charles Thornton --- focuses primarily on myotonic dystrophy (DM) and facioscapulohumoral dystrophy (FSHD). These six centers were established as a result of the MD CARE Act’s passage in Congress in 2001. This act mandated that more governmental funding be spent on muscular dystrophy research.
The meeting offered presentations by the six centers, leaders of muscle research at the NIH (Drs. John Porter and Glen Nuckolls), the CDC, the MDA and six advocacy groups. The thrust of the meeting was collaboration and translational research, i.e. all of us working together from research in the laboratory, to clinical trials, approval by the FDA, through the development of a drug for treatment of the disease and then to the affected community.
Shortly after the meeting, Dr. John Porter, the Program Director of Neuromuscular Disease at NINDS, a branch of the NIH, expressed in an email to all participants, “Hope that you think of us not as faceless government bureaucrats, but rather as facilitators who care about making a difference for these diseases.”
It was a very good meeting.
