Page 19 - Fall 2020 CMTA Report

TEAM JULIA SWIMS AGAIN Rachael, Julia and
Herb Beron
hile there were only three people in the pool for the 14th
Annual Team Julia swim on August 9, the ripples from the
W virtual event spread far and wide.
CMTA Board Member Herb Beron, his wife Rachael and
daughter Julia were joined by family members and friends who
did their own virtual swims and walks in their communities, raising
more than $71,000 for the CMTA’s STAR research program.
Over the past 14 years, the Beron event has raised over $1 million
for research.
“We are incredibly thankful for donors’ continued commit-
ment to the CMTA and to the youth living with CMT,” Herb said,
noting that it is not too late for others to join the Beron family by
holding their own virtual events or by donating to the dollar-for-
dollar match for 2E research at www.cmtausa.org/julia.

CMTA CENTERS OF EXCELLENCE

www.cmtausa.org/coe

CMTA CENTERS OF EXCELLENCE are patient-centric, CMTA CENTER OF EXCELLENCE CLINICAL DIRECTOR
Cedars-Sinai Medical Center (Los Angeles)...................................Drs. Matthew Burford and Richard Lewis
multidisciplinary CMT clinics where children, adults and Children's Hospital Colorado (Aurora)*.........................................Dr. Michele Yang
families affected by CMT can be assured of receiving Children’s Hospital of Philadelphia (Philadelphia)..........................Dr. Sabrina Yum
comprehensive care by a team of CMT experts. The Centers Children’s Hospital of Pittsburgh (Pittsburgh)*.............................Dr. Hodas Abdel-Hamid
Children’s National Hospital (Washington, DC)*............................Dr. Diana Bharucha-Goebel
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 Hospital for Special Care* (New Britain, CT).................................Dr. Kevin J. Felice
academic medical centers, patient support organizations and Johns Hopkins University (Baltimore)...........................................Dr. Thomas Lloyd
Kane Hall Barry Neurology (Dallas/Fort Worth)* ...........................Dr. Sharique Ansari
clinical research resources sponsored in part by the CMTA. Lucile Packard Children’s Hospital at Stanford (Palo Alto)............Drs. John Day and Ana Tesi Rocha
The centers will become even more important as the CMTA Massachusetts General Hospital (Boston).....................................Dr. Reza Seyedsadjadi
begins clinical trials, which will depend on how much we Nationwide Children's Hospital (Columbus)*..........................................Dr. Zarife Sahenk
Nemours Children’s Hospital (Orlando).........................................Dr. Richard Finkel
know about the “natural history” of CMT—how different Northwestern Memorial Hospital (Chicago)*.................................Dr. Daniela Maria Menichella
types of CMT progress over time and whether novel Ohio State University (Columbus) .................................................Dr. Samantha LoRusso
Oregon Health & Science University (Portland)*...........................Dr. Chafic Karam
medications are slowing the course of the disease. Much of Rush University (Chicago)*...........................................................Dr. Ryan D. Jacobson
that information will be supplied by the Centers of Excellence. Stanford Neuroscience Health Center (Palo Alto) .........................Dr. John Day
University of California (San Francisco)* ......................................Dr. Alex Fay
University of Colorado (Aurora)*...................................................Dr. Vera Fridman
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
Washington University SOM St. Louis (St. Louis)*.......................Dr.Stefanie Geisler
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

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