Page 22 - 2019 Fall CMTA Report

CMTA

BRANCH

Chicago
NEWS CHICAGO, IL New Hampshire

The Chicago Branch welcomed guest
speaker David Tannenbaum to its meeting on events, including the Cycle (and Walk!) 4 CMT
TAMPA BAY AREA, FL June 8. David is on the CMTA Advisory fundraiser, which is held every August.
A dozen members met June 8 to share STAR Board and is a licensed psychotherapist in H
research updates, talk about patient involve- New York City. He leads the Emotional Sup- PITTSBURGH, PA
ment in the research process, and chat about port Group on the CMTA website and writes Eighteen people from the Pittsburgh Branch
the many CMTA community events happen- the Ask David Column in The CMTA Report. turned out on May 18 to hear special guest
He reminded the 15 members in attendance
ing around the country, including the speaker Clark Semmes. Semmes, a CMTA
branch’s September Walk 4 CMT. Members to live in the moment, feel and identify feel- branch leader and Advisory Board member,
also learned that neurologist Dr. Nivedita ings, take a deep breath and move on. He joined the group via Skype to share informa-
also suggested that people with CMT have
Jerath was accepting patients in Winter Park, great compassion for others, learn to plan tion about the CMT clinical trial he’s taking
part in with Acceleron Pharma. Clark humor-
Florida. The meeting included an open dis- ahead and become creative problem solvers.
cussion about bracing, medicines including Finally, David told members that it’s ok to ously talked about his adventures being a
patient participating in the research process.
CBD and exercise.
ask for help, that asking is not a sign of The group had many questions for Clark and
weakness and that they should just ask posi- wonderful conversation ensued.
tively and directly for what they need. H
H MADISON, WI
NEWBURY, NH Thirty members of the Madison, WI branch
The Newbury, NH Branch welcomed CMTA welcomed CMTA Advisory Board Member
Board Member Elizabeth Ouellette to its June David Tannenbaum to their meeting on
8 meeting. Before Elizabeth began, Jacinta August 17. Members called Tannenbaum’s
Gantz welcomed members to the newly presentation “phenomenal” and agreed that
formed branch and everyone introduced it was one of their best meetings yet. After a
themselves. Elizabeth shared a STAR research two-hour chat about the emotional and intel-
Tampa Bay update, reviewed key CMT facts and talked lectual issues that accompany CMT,
about CMTA resources, partnerships and members socialized over pizza and drinks.

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
CMTA CENTERS OF EXCELLENCE are patient-centric, multidisciplinary CMT clinics Hospital for Special Care* (New Britain, CT).................................Dr. Kevin J. Felice
where children, adults and families affected by CMT can be assured of receiving Johns Hopkins University (Baltimore)...........................................Dr. Thomas Lloyd
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
whether novel medications are slowing the course of the disease. Much of that Oregon Health & Science University (Portland)*...........................Dr. Chafic Karam
information will be supplied by the Centers of Excellence. Rush University (Chicago)*...........................................................Dr. Ryan D. Jacobson
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

22 THE CMTA REPORT FALL 2019