Page 15 - 2020 Winter CMTA Report

Atlanta Patient/Family Conference—

Standing Room Only

he CMTA’s latest Patient/ pain and fatigue through
Family Conference, held in exercise, laughter and
Atlanta on November 2, activity.
2019, was virtually standing There were also
T room only and featured a presentations by several
full agenda with CMT experts members of the CMTA
from across the country. CMTA Advisory Board.
CEO Amy Gray kicked off the Pulmonary specialist
program by introducing the Youth Ashraf Elsayegh, MD,
Council, whose members serve FCCP, from Cedars-Sinai
as the voice of youth within the Medical Center addressed where the group spent two hours
CMTA community. The aim of pulmonary complications and exploring. Over a pizza lunch, the
the Youth Council is to connect management in CMT, including group chatted about the best and
as many CMT youth as possible. diaphragm dysfunction, scoliosis, worst parts of having CMT, con-
As one member stated, “Making vocal cord paralysis and sleep dis- necting over similar struggles and
connections with others the same orders. Glenn Pfeffer, MD, also emotions. Post-lunch, the teens
age is a game changer.” from Cedars-Sinai Medical Center, headed to the Coca-Cola Museum,
CMTA Board Member reviewed foot surgery options. where they learned the history of
Michael Shy, MD, head of the Observing that there are 20 mus- Coke products from all over the
CMTA Center of Excellence at cles, 26 bones and 33 joints in the world and had the opportunity to
the University of Iowa, presented foot, Dr. Pfeffer said that walking taste-teste 57 of them. It was a
exciting news about clinical trials. a mile puts 100,000 pounds of wonderful day, proving again that
New approaches to research, use stress on the feet of an individual when the CMTA brings together
of biomarkers and MRIs are get- without CMT. For someone with youth who understand CMT, fun
ting us closer to finding success in CMT, that same mile puts 1 mil- and friendship result. h
changing the course of CMT, he lion pounds of stress on the foot,
told the audience. Shawna Feely, he said, adding that surgery can
15 teens spent a fun day
CGC, also from the CMTA Cen- eliminate bracing and future dam- together, including a visit to
ter of Excellence at the University age to the feet. Elizabeth Misener, the Georgia Aquarium.
of Iowa, educated the attendees PhD, LMSW, the co-founder of
about genetics. She referred to Vitality at Work, spoke about the
CMT as “one name, many dis- challenges of coping with CMT,
eases” and covered testing options which affects three members of
as well as how CMT is diagnosed her immediate family. She empha-
and passed down in families. sizes breathing, acknowledging
CMTA Board Chairman and embracing imperfections and
Gilles Bouchard gave a STAR working on a growth mindset.
research update that included drug The program was completed
development, gene therapy and by DeLana Finney, CPO, from
biomarkers. He reviewed specific Hanger Clinic and Rodney Vaden,
plans for CMT1A, CMT1X, Mid-South District Manager for
CMT2A, CMT2E, CMT4C and Allard USA, who talked about
undiagnosed CMT 2s. CMTA braces and “finding the right tool
Board Member Elizabeth Ouel- for the job.”
lette presented “Staying Active: While the experts opined and
Move, Groove & Improve.” Not- parents mingled, a group of 15
ing that CMT patients often feel teens embarked on a day of fun
differently than they appear, she and friendship. Their first stop was
suggested dealing with chronic the acclaimed Georgia Aquarium,

WINTER 2020 THE CMTA REPORT 15