Page 29 - 2021 Winter CMTA Report

CMTA senters and topics of interest for future quar- CHESTER COUNTY, PA
terly meetings, which in the short run will
Nine members of the Chester County Branch
likely be virtual.
H welcomed Jonah Berger, the CMTA national
youth programs manager, to their December
BRANCH NEWBURY, NH 12 meeting. He told the group about the
Sara O’Dougherty from Granite State Inde-
huge success of taking Camp Footprint
pendent Living joined five members of the
NEWS Newbury, NH Branch on Zoom October 1 to online in 2020 and upcoming projects. He
also talked about his personal experience
share valuable information about helping
with CMT and how his positive attitude helps
people live independently. Sara explained
him to stay motivated to enjoy life. The
that the agency’s goal is not just to provide
transportation for disabled people, but to also branch also discussed the results of their
fundraising efforts in 2020, which totaled
teach them about home care, adding accom- $7,200 between virtual walk and bingo
modations into their homes, building ramps
SAN DIEGO, CA and much more. The next meeting will be in events. They reviewed the CMTA
Eight members of the San Diego Branch wel- February. Patient/Family Conference topics available
comed orthotist Ara Mirzaian from the H online and a member shared a favorite ses-
Hanger Clinic to their December 5, 2020, TULSA, OK sion from attending the live conference.
meeting. He shared great information and The Tulsa, OK Branch welcomed guest H
answered members’ questions on bracing speaker Laurel Richardson to its fun and PITTSBURGH, PA
and orthotic options for people with CMT. A festive branch meeting on December 5. Eleven members of the Pittsburgh Branch
member who has benefited from Ara’s years Everyone wore holiday attire or “ugly Christ- welcomed three guest speakers to their
of prosthetic and orthotics experience rec- mas sweaters” and played fun virtual games. November 14 meeting: Elizabeth Ouellette,
ommended that anyone in need contact him They also talked about how everyone is Laurel Richardson and Julie Tarle. Elizabeth,
at his Encinitas office with questions regard- doing this year and how everyone is dealing who is a longtime patient advocate and
ing bracing and orthotics for CMT. with CMT. CMTA board member, shared an incredibly
H H informative presentation on “CMT & Myth-
DESTIN, FL BUCKS COUNTY, PA busting: Separating Fact from Fiction.” The
It didn’t take long for the nine people attend- The Bucks County Branch welcomed guest presentation helped to eliminate some of the
ing the September 26, 2020, inaugural speaker Dragan Vujovic to its November 21 confusion surrounding CMT as it relates to
meeting of the Destin, FL Branch to begin meeting. Dragan is working on the ACT-CMT other diseases. Laurel shared information
sharing their CMT stories and building cama- study with Dr. Steven Scherer at the CMT about resources and education for managing
raderie. Members bonded over common Center of Excellence at UPenn in Philadel- and living with CMT. She also talked about
experiences and shared information about phia. He talked about what kinds of data are the many upcoming virtual meetings and
pain management, bracing, medications, being gathered through the study, how it will events available to the community, which can
physical therapy, occupational therapy and contribute to CMT treatments and what is on be found at www.cmtausa.org. Finally, Julie,
resources available through the CMTA. Laurel the horizon for other types of CMT research. the CMTA’s special events manager, shared a
Richardson, the CMTA director of community The group also spent time talking about how WALK 4 CMT update and talked about the
outreach, talked about the organization and everyone is holding up during such a chal- organization’s amazing strides in event
its purposes. The group also discussed pre- lenging year. fundraising.

CMTA WELCOMES NEW FLORIDA BRANCH

he CMTA welcomed a new branch to the family in 2020, this one
in Destin, Florida. Branch leader Ted Spring is determined to tell
T the world about CMT.
Ted and his wife moved to Destin not too long ago and soon after
he bravely raised his hand to start a branch in that region. Due to
COVID, they have only met virtually but the group looks forward to get-
ting together in person when it’s safe to do so.
Ted said he wanted to start a branch to help others avoid some of the
issues he faced on his road to diagnosis. He was misdiagnosed with herniated
discs in 1968 and underwent spinal surgery. The symptoms didn’t abate with
surgery and he wasn’t diagnosed with CMT until 2015. Orthotics changed his
life he says, not just because they helped him to walk but also because of the
interest the braces attracted. The many questions he got about the braces gave
him an opening to talk about CMT. The experience left him determined “to do my part to inform, educate
and help people benefit from the work of CMTA,” he said.
Ted says he continues to be "surprised" about the lack of knowledge people have concerning the disease
and the availability of support services once they have been diagnosed. “Support services, including CMTA
branches, help people get connected, informed and more involved in treating their CMT,” he says.
To find a branch in your area, go to www.cmtausa.org/branches/.

WINTER 2021 THE CMTA REPORT 29