Page 22 - 2020 Spring CMTA Report

NEW CMTA CENTER OF EXCELLENCE AT UCSF

ediatric neurologist Alex Fay, MD, PhD, heads the CMTA’s newest Center of Excellence at
Pthe University of California San Francisco. Jonathan Strober started the multidisciplinary
pediatric neuromuscular clinic at UCSF in 1999, and it includes pulmonology, cardiology,
physical and occupational therapy, respiratory therapy and social work in one location, as well
as collaboration with experienced colleagues in orthopedics, neurosurgery and physiatry.
The neuromuscular clinic at UCSF-Mission Bay is pediatrics focused, and staffed by
Drs. Strober and Fay, while adults are seen by Drs. Ralph, Poncelet, Lomen-Hoerth, Rosow
and Greene primarily at the Parnassus campus of UCSF. UCSF is a site for several clinical
trials in neuromuscular diseases, and its clinics provide an opportunity for medical students,
residents and neuromuscular fellows to learn about the diagnosis and treatment of neuromus-
cular diseases across the age spectrum.
Dr. Fay obtained his PhD in Biophysics and MD from UCSF, and completed his child
neurology residency and neuromuscular fellowship at Washington University in St. Louis. Since
joining the faculty at UCSF, he has devoted his time to identifying a novel form of CMT in a
large family from South America, developing CRISPR-based therapeutics for CMT2, serving
as an investigator on several clinical trials for childhood neuromuscular diseases, and expanding Pediatric neurologist Alex Fay, MD,
PhD, heads the CMTA’s Center for
his neuromuscular practice to include UCSF Benioff Children’s Hospitals in both San Francisco
Exellence at University of California
and Oakland. He is a native of the Bay Area and is proud to be serving this community. San Francisco.

CMTA CENTERS OF EXCELLENCE

www.cmtausa.org/coe

CMTA CENTERS OF EXCELLENCE are patient-centric, multidisciplinary CMTA CENTER OF EXCELLENCE CLINICAL DIRECTOR
CMT clinics where children, adults and families affected by CMT can be Cedars-Sinai Medical Center (Los Angeles)...................................Drs. Robert Baloh and Richard Lewis
assured of receiving comprehensive care by a team of CMT experts. Children’s Hospital of Philadelphia (Philadelphia)..........................Dr. Sabrina Yum
Children’s Hospital of Pittsburgh (Pittsburgh)*.............................Dr. Hodas Abdel-Hamid
The Centers roughly correspond to the 21 international sites that make up
Connecticut Children’s Medical Center (Farmington).....................Dr. Gyula Acsadi
the NIH Inherited Neuropathies Consortium (INC)—a group of academic
Hospital for Special Care* (New Britain, CT).................................Dr. Kevin J. Felice
medical centers, patient support organizations and clinical research Johns Hopkins University (Baltimore)...........................................Dr. Thomas Lloyd
resources sponsored in part by the CMTA. The centers will become even Kane Hall Barry Neurology (Dallas/Fort Worth)* ...........................Dr. Sharique Ansari
more important as the CMTA begins clinical trials, which will depend on Lucile Packard Children’s Hospital at Stanford (Palo Alto)............Drs. John Day and Ana Tesi Rocha
how much we know about the “natural history” of CMT—how different types Massachusetts General Hospital (Boston).....................................Dr. Reza Seyedsadjadi
of CMT progress over time and whether novel medications are slowing the Nationwide Children's Hospital (Columbus)*..........................................Dr. Zarife Sahenk
Nemours Children’s Hospital (Orlando).........................................Dr. Richard Finkel
course of the disease. Much of that information will be supplied by the Northwestern Memorial Hospital (Chicago)*.................................Dr. Daniela Maria Menichella
Centers of Excellence. Ohio State University (Columbus) .................................................Dr. Amro Stino
Oregon Health & Science University (Portland)*...........................Dr. Chafic Karam
Rush University (Chicago)*...........................................................Dr. Ryan D. Jacobson
Stanford Neuroscience Health Center (Palo Alto) .........................Dr. John Day
University of California (San Francisco)* ......................................Dr. Alex Fay
University of Florida (Gainesville)*................................................Dr. James Wymer
University of Illinois at Chicago (Chicago)*...................................Dr. Charles K. Abrams
University of Iowa (Iowa City) ......................................................Dr. Michael Shy
University of Miami (Miami)..........................................................Dr. Mario Saporta
University of Michigan (Ann Arbor)*.............................................Dr. Dustin Nowacek
University of Minnesota (Maple Grove) ........................................Dr. David Walk
University of Missouri (Columbia).................................................Dr. Raghav Govindarajan
University of North Carolina (Chapel Hill)*....................................Dr. Rebecca Traub
University of Pennsylvania (Philadelphia) .....................................Dr. Steven Scherer
University of Pittsburgh Medical Center (Pittsburgh)*..................Dr. Sasha Zivkovic
University of Rochester (Rochester, NY) ......................................Dr. David Herrmann
University of Texas Southwestern (Dallas)* ..................................Drs. Susan Iannaccone and Diana Castro
University of Utah (Salt Lake City).................................................Dr. Russell Butterfield
University of Washington (Seattle)................................................Dr. Michael Weiss
Wayne State University (Detroit) ...................................................Dr. Jun Li
*These Centers of Excellence are not part of the INC.
INTERNATIONAL
The Children’s Hospital (Westmead, Australia)..............................Dr. Manoj Menezes
The National Hospital for Neurology
& Neurosurgery (London, England) ..............................................Dr. Mary Reilly
C. Besta Neurological Institute (Milan, Italy) .................................Dr. Davide Pareyson
University of Antwerp (Edegem, Belgium).....................................Dr. Jonathan Baets

22 THE CMTA REPORT SPRING 2020