Page 20 - 2020 Winter CMTA Report

CMTA 2019. He explained how braces help people New Hampshire
walk and shared information about Allard’s
dynamic carbon-fiber braces. The braces got
BRANCH the thumbs up from all the members who
tried them.
H
SPRINGFIELD, MO
NEWS Nine people attended the Springfield branch
meeting on September 21, 2019. They
reviewed the slides (and received copies of
the presentations) from the St. Louis CMTA
Patient/Family Conference. Members dis-
cussed challenges in functioning, their
CONNECTICUT BRANCHES doctors and the day-to-day issues of living
The Hartford and Southern Connecticut
Branches held a joint meeting on October 24, with CMT. Group members decided to hold a patients. One of Ken’s recommended bracing
Walk 4 CMT on September 19, 2020.
2019, at the Hospital for Special Care, a CMT H options was the Dynamic Carbon Ground
Center of Excellence. Dr. Kevin Felice and his Reaction AFO, and a few members were so
team gave the 35 attendees a tour of the neu- LAS VEGAS, NV impressed with the brace that they made fol-
romuscular clinic at the Hospital for Special Nineteen people attended the Las Vegas low-up appointments with Ken to learn more.
Care and facilitated a discussion about CMT Branch meeting on October 19, 2019. H
Branch Leader Martha Boadt shared high- NEW MEXICO
lights and presentations from the CMTA Three new members came to the New Mex-
Patient/Family Conference in St. Louis. ico branch meeting on November 2, 2019,
The group also talked about easy ways to for a total of 18 attendees. Two representa-
fundraise, such as writing family and friends tives from GeneDX talked about genetic
asking them to contribute to STAR research. testing for CMT and the practical aspects of
Connecticut Martha raised $873 simply by emailing a getting testing done, such as getting a
fundraising letter to friends and family. request “through the system” and who can
and what’s happening in research. Kudos to H order it.
branch leaders Roy Behlke (Hartford, CT/ NEWBURY, NH H
Naples, FL) and Lynne Krupa (Southern The Newbury Branch welcomed 12 attendees WESTCHESTER, NY
Connecticut) for helping plan the meeting. to its meeting on November 9, 2019, to hear Eighty-three people came out for the
H orthotist and CMTA Advisory Board Member Westchester Branch’s 7th annual luncheon at
CHICAGO, IL Ken Cornell talk about the benefits of thera- the Tarrytown Hilton on September 14, 2019.
Jim King of Allard USA spoke to nine mem- peutic interventions such as AFOs, which
bers of the Chicago branch on August 31, can improve gait and balance issues for CMT (continued on page 22)

CMTA CENTERS OF EXCELLENCE CMTA CENTER OF EXCELLENCE CLINICAL DIRECTOR
Cedars-Sinai Medical Center (Los Angeles)...................................Drs. Robert Baloh and Richard Lewis
Children’s Hospital of Philadelphia (Philadelphia)..........................Dr. Sabrina Yum
www.cmtausa.org/coe Children’s Hospital of Pittsburgh (Pittsburgh)*.............................Dr. Hodas Abdel-Hamid
Connecticut Children’s Medical Center (Farmington).....................Dr. Gyula Acsadi
Hospital for Special Care* (New Britain, CT).................................Dr. Kevin J. Felice
CMTA CENTERS OF EXCELLENCE are patient-centric, multidisciplinary CMT clinics
Johns Hopkins University (Baltimore)...........................................Dr. Thomas Lloyd
where children, adults and families affected by CMT can be assured of receiving
Kane Hall Barry Neurology (Dallas/Fort Worth)* ...........................Dr. Sharique Ansari
comprehensive care by a team of CMT experts. The Centers roughly correspond to the
Lucile Packard Children’s Hospital at Stanford (Palo Alto)............Drs. John Day and Ana Tesi Rocha
21 international sites that make up the NIH Inherited Neuropathies Consortium (INC)— Massachusetts General Hospital (Boston).....................................Dr. Reza Seyedsadjadi
a group of academic medical centers, patient support organizations and clinical Nationwide Children's Hospital (Columbus)*..........................................Dr. Zarife Sahenk
research resources sponsored in part by the CMTA. The centers will become even more Nemours Children’s Hospital (Orlando).........................................Dr. Richard Finkel
important as the CMTA begins clinical trials, which will depend on how much we know Northwestern Memorial Hospital (Chicago)*.................................Dr. Daniela Maria Menichella
about the “natural history” of CMT—how different types of CMT progress over time and Ohio State University (Columbus) .................................................Dr. Amro Stino
Oregon Health & Science University (Portland)*...........................Dr. Chafic Karam
whether novel medications are slowing the course of the disease. Much of that
Rush University (Chicago)*...........................................................Dr. Ryan D. Jacobson
information will be supplied by the Centers of Excellence.
Stanford Neuroscience Health Center (Palo Alto) .........................Dr. John Day
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
20 THE CMTA REPORT WINTER 2020