Page 25 - Fall 2020 CMTA Report

CMTA Advisory Board, is one of only a few geneti- COLUMBUS, OH
cists who specialize in neurogenetics and an
The Columbus Branch welcomed special
expert in the genetics of CMT. She started
guest speaker neurologist Dr. Zarife Sahenk
BRANCH with a slide presentation that was packed to its virtual branch meeting July 15.
with info on inheritance patterns and
Dr. Sahenk leads the CMTA Center of Excel-
followed that with an extended question-
lence at Nationwide Children’s Hospital in
and-answer period.
Columbus. In addition to seeing many CMT
NEWS h patients in her clinic, she works extensively
NEW MEXICO
on CMT research. Dr. Sahenk gave an
The New Mexico Branch met on Zoom for
in-depth presentation on CMT and shared
the first time on August 1 with nine mem-
bers in attendance. CMTA Board Member information about her upcoming gene
therapy trial at Nationwide.
Elizabeth Ouellette spoke on staying active h
CHICAGO, IL with CMT and using “activity as a treatment.” CHESTER COUNTY, PA
The Chicago branch held virtual meetings She pointed out that there is a lot of The Chester County Branch met on August
on July 8 and July 23. Branch member Paul exercise information on the CMTA website 31 to discuss their plans for participating in
Fowler, a health coach and registered Thai (www.cmtausa.org) including things such the Virtual Walk 4 CMTA and CMT Aware-
therapist, spoke at the first meeting. He gave as Pilates and chair yoga. The next New ness Month. Branch co-leader Ashley
a wonderful and timely presentation entitled Mexico Branch meeting will be on Saturday, Trout shared her screen with the group
Breath Work, Meditation, and Movement— November 7, most likely on Zoom, and the and explained how to register for the walk.
stress Reduction Techniques for a Stressful topic will be CMT and pain. Individual walks took place throughout the
Time. He led some great breathing exercises, h month of September. A few of the members
a body awareness meditation and a joint- CLEVELAND, OH planned to walk together, socially distanced,
loosening exercise. Dr. Ryan Jacobson, Thirteen people attended the Cleveland at a local park. In addition to the virtual walk,
director of the CMTA Center of Excellence at Branch’s July 16 meeting. The topic was the branch held a virtual Bingo Night on
Rush University, spoke to the second meet- “Enhancing Overall Wellness through September 24 as a way for members to get
ing about the various forms of CMT, research Exercise & the Benefits for CMT” presented together and also raise money for the CMTA.
news and ideas for living with CMT. He also by Lisa Augustine, PhD. Dr. Augustine h
outlined what a typical visit to his clinic reviewed key points of healthy self-care, SEATTLE, WA
entails. including stress management, adequate The Seattle Branch met virtually on July 11
h sleep, healthy eating and exercise. She then with 12 people in attendance. Participants
BALTIMORE, MD reviewed stretching exercises and exercises talked about the ups and downs of the pan-
The Baltimore Branch held three virtual that could aid in balance. She closed by demic, braces and foot surgery. They also
branch meetings via Zoom last summer. The asking each attendee to set a small goal of discussed the idea of a virtual wine tasting
first meeting was held on July 19 with guest something they wanted to do to help with a and having Camp Director Jonah Berger
speaker Jonah Berger, National Youth Pro- healthier lifestyle. as a guest speaker.
grams Manager for the CMTA, who spoke
about Camp Footprint and his own CMT jour-
ney. Camp Footprint was held virtually this
year but did not lack in enthusiasm or good
times. The second meeting was held on THERE’S STILL TIME TO WALK 4 CMT
August 15 with guest speaker David Tannen-
baum, psychotherapist and CMTA Advisory ecause this year’s Walks 4 CMT are virtual,
Board member. He discussed methods for Bparticipants aren’t limited by either time or
dealing with the blues while coping with both
CMT and a pandemic. The third meeting was location. Sign up today to hold a walk or mini-
held on September 19 with guest speaker walk—anyone, anywhere can participate!
Dr. Steven Scherer, a neurologist at the Walk 4 CMT is a volunteer-led national
University of Pennsylvania and one of
the country’s leading experts on CMT. fundraising campaign for the CMTA. Funds raised
Dr. Scherer discussed the latest advance- fuel the CMTA’s quest to find treatments and a
ments in the search for a cure and answered cure for CMT. The walks have already started, but
questions from participants.
h participants have until year’s end to hold one.
NEWBURY, NH The walks look a little different this year—and
The Newbury, NH CMTA Branch met online sometimes stretch the definition of “walk” to its
July 11 with seven people in attendance.
They welcomed two guest speakers: CMTA breaking point, but the momentum continues.
Board Member Elizabeth Ouellette, co-chair Walk leaders have come up with a number of cre-
of the annual Cycle (and Walk!) 4 CMT, ative ways to be together using Zoom and social
which raises funds for STAR research, and
Laurel Richardson, CMTA director of com- media. Many are kicking things off with a fun
munity outreach. Laurel talked about the activity like a Bingo or trivia game night, then
CMTA’s Patients as Partners in Research ini-
tiative, clinical trials, Camp Footprint, CMTA walking for an entire month, some in smaller
Centers of Excellence and much more. groups, all with proper social distancing. Mike
h Casey from the Syracuse Walk even had a face
CENTRAL NEW JERSEY
Twenty people from the Central New Jersey mask fashion show on Zoom to kick things off.
and Buck’s County Branches gathered on
Zoom July 12 for a presentation by genetic Look for a walk near you or check out our OWN Walk page www.walk4cmt.org and
counselor Shawna Feeley, MS, LGC, from the don’t forget to join our new Walk 4 CMT Facebook page www.facebook.com/Walk4CMT.
University of Iowa CMTA Center of Excel-
lence. Shawna, a member of the CMTA’s
FALL 2020 THE CMTA REPORT 25