Page 23 - 2021 Summer CMTA Report

VIRTUAL BRANCH MEETING NOTES

when she was 19, and after a challenging jour- especially meaningful to watch the life-chang-
ney spent trying to understand her body and ing difference that great braces make for
CMT, she discovered the benefits of meditation people living with CMT.
and mindfulness. She has been meditating for
the past 10 years and even became a profes- RESEARCH TRIANGLE/WILMINGTON, NC
sional meditation/mindfulness instructor with The Research Triangle and Wilmington
advanced training in trauma-sensitive mindful- branches held a joint meeting on May 1
ness. Jackie shared how meditation changed with 12 people present to welcome special
ORANGE COUNTY, CA her relationship with her body and her diagno- guest speaker David Tannenbaum. David, a
Seventeen people, including new Branch sis, as well as some meditation psychotherapist who has CMT,
Leader Beth Dorin, came out for the inaugural and mindfulness practices. serves on the CMTA Advisory
meeting of the Orange County branch on The branch also gathered Board and writes the “Ask
March 2. All of the attendees have CMT on February 17 to catch up David” column in The CMTA
(mostly 1A) and a couple of them have young as a branch and welcome Report. He led the group
adult children with CMT. The parents of children new members. The seven through a meaningful discussion
with CMT mentioned how great it would be attendees played a great on emotional wellness in which
to connect their kids with others in their age introduction game called 2 many shared their sadness,
group. Members also talked about topics of Truths & 1 Lie. Members briefly guilt and fears surrounding their
interest for the year and future guest speakers. explained their journeys with disease. It was a productive and
valuable meeting with great
DENVER, CO CMT and what’s been helpful, takeaways about letting go of
as well as what hasn’t been.
Members of the Denver branch shared local Members also discussed local fear and staying in the present.

resources for bracing at their April 15 meeting. resources for surgeries, AFOs,
They also welcomed two representatives from doctors and specialists. CHESTER COUNTY, PA
the CMTA Center of Excellence at Children’s Two orthotists from ABILITY
Hospital of Colorado, which is led by neurolo- NEW MEXICO Prosthetics and Orthotics pre-
gist Dr. Michelle Yang, who joined the meeting Nineteen members of the New Mexico branch members sented on bracing solutions and
to introduce themselves to branch members. New Mexico branch wel- welcomed actor Joy Perry, who has getting the most of a visit with an
orthotist at the Chester County
DESTIN, FL comed first-time actor Joy CMT, to their February meeting. branch’s March 20 meeting.
Perry to their February 6
Three presenters from GeneDX dazzled meeting. Joy, who has CMT, The 22 members in attendance
members of the Destin, FL branch at their last recently appeared in a Hallmark movie, The shared their experiences with this company as
meeting with a wide-ranging presentation Christmas Bow, playing a character who has well as various types of orthotics, shoes and
on genetic testing. They described the the disease. Joy shared her history with CMT devices for daily living that work for them.
company’s neuropathy test offerings, including as well as her experiences as someone without
a hereditary neuropathy panel (64 total genes), previous acting experience in making this TV PITTSBURGH, PA
a core CMT panel (four genes), an axonal CMT movie. The Zoom session was recorded and Nine people welcomed guest speaker Julie
panel (32 genes), a demyelinating CMT panel will be available at a later date for individuals Tarle, the CMTA’s special events manager, to the
(23 genes), a CMT panel (43 genes) and a and other branches to view. April 17 meeting of the Pittsburgh branch. Mem-
hereditary sensory and autonomic neuropathy bers debated whether to have their WALK 4 CMT
panel (14 genes). Members learned that genetic SYRACUSE, NY in-person or virtually, with the majority saying
testing can lead to a positive diagnosis, a The Syracuse branch met on February 6 with they felt comfortable holding an in-person walk
negative diagnosis, or an inconclusive result 40 people present to welcome special guests using state guidelines for COVID-19. Members
and discussed the importance of seeking Drs. David Herrmann and Katy Eichinger from also discussed date, time and location possibil-
professional genetic counseling. the CMTA Center of Excellence at the Uni- ities and got excited about planning the annual
walk, though no final decisions were made.
PORTLAND, ME versity of Rochester. Dr. Herrmann, the clinic
director, gave a great presentation defining
Ten members of the Portland branch welcomed CMT, explaining genetic testing and inheritance DALLAS/FT. WORTH, TX
guest speaker Laurel Richardson, CMTA direc- patterns and describing how CMT affects Dr. Sharique Ansari, a neurologist and the
tor of community outreach, to their January 12 patients. Dr. Eichinger, a physical therapist and director of the CMTA Center of Excellence at
meeting. Laurel shared updates on clinical trial evaluator, discussed Kane, Hall, Barry Neurology in Bedford, was the
the CMTA’s education and community physical therapy and the importance guest speaker at the Dallas/Ft. Worth branch
programs. Members also spent time of physical activity. She also talked meeting May 1. Twelve people listened as
catching up with fellow CMTers and about the sensor gait study being Dr. Ansari shared an incredible presentation
planning for the year. They decided conducted at the Rochester Center on CMT with detailed information about the
to meet every month or so this year of Excellence. disease, the diagnostic process, genetic testing
because Zoom makes it so easy. They and much more and then answered questions
also agreed to work on building a WESTCHESTER, NY from the group.
“local resources” list for the branch. A dozen people came out May MADISON, WI
LAS VEGAS, NV 1 to hear guest speaker Laurel Twenty members of the Madison branch
Richardson, the CMTA director of
Seven members of the Las Vegas community outreach, give a high- welcomed special guest speaker John Svaren,
branch welcomed orthotist David CMTA Director of level overview of the STAR research PhD, to their March 4 meeting. Svaren chairs
Kovach to their meeting on January 23. Community Outreach initiative. She detailed the many the CMTA Scientific Advisory Board and is very
David shared valuable information on Laurel Richardson has ways the CMTA is tackling research involved with advancing CMT research. He is
participated in many
bracing and orthotics and emphasized branch meetings over for nearly every subtype. a professor in the Department of Comparative
the importance of finding the right brace Zoom this year. Biosciences at the University of Wisconsin and
for each individual, a lesson borne out On March 6, 27 people came out serves as director of the Cellular and Molecular
by the fact that everyone in the group to hear guest speakers Ken Cornell Neuroscience core at the UW Waisman Center,
wore a different type of brace. and Laurie Lasky take part in an in-depth dis- where his laboratory is located. Since 2000, he
cussion on bracing and AFOs. Ken is a certified has focused his research on the genetic basis
NEWBURY, NH orthotist in Boston and works with the CMTA of peripheral myelination and the disruptions
Six members of the Newbury branch welcomed Center of Excellence team at Mass General. found in peripheral neuropathies such as
guest speaker Jacqueline Piazza to their April Laurie, the NE district manager for bracing CMT. Svaren shared a STAR research update
10 meeting. Jackie was diagnosed with CMT manufacturer Allard, told the group she finds it and then took questions from the group.

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SUMMER 2021 THE CMTA REPORT