Page 3 - 2021 Summer CMTA Report

Dear Friends,
As the great author E.M. Forster wrote in Howards End, “Only connect.” At the CMTA, we are
emerging from the myriad difficulties of the pandemic with a newfound sense of connection.
We reached out to connect with the community right from the start. You may have been the
recipient of one of the more than 10,000 “welfare” calls we made to community members to
ensure they were well and safe. We also expanded the mailing list for The CMTA Report and
published multiple articles on CMT and COVID-19 so community members could stay informed.
The pandemic forced virtually all of the CMTA’s community outreach and education activities
online. Our intrepid branch leaders held meetings throughout the pandemic, inviting CMT experts
to share educational talks on the many facets of CMT, from genetics and foot care to occupational
therapy for CMT hands to breathing issues. Members connected over shared tips, as they always
do, and you’ll read about one of them in this issue: a heater massager that a member learned
about at a branch meeting.

The CMTA’s Facebook groups provided a much-needed space for connection during the
uncertainties of the pandemic. The CMTA Discussion Group, a Facebook group with more than A MESSAGE
17,000 members, provided a welcoming and helpful community to everyone with CMT. If you’ve
not yet connected, we invite you to join at www.facebook.com/CMTAssociation.
At the national level, we connected people across the country with our monthly educational FROM THE CEO
meetings featuring special guest speakers on everything from pain management, bracing and The Power of
surgery for the CMT foot, to occupational therapy, emotional wellness and nutrition. In this issue,
you’ll read about two such sessions: Managing CMT Symptoms with Nutrition and Occupational Connection
Therapy for CMT Hands.
The CMTA’s Strategy to Accelerate Research (STAR) is also continuing to forge new connections
between and among our alliance partners. While we delivered a comprehensive research update
in the spring, we already have more to report as you’ll read about in stories on grants totaling
$1.5 million. The new grants will fund a study into whether a common food additive can be used
to treat CMT1X, biomarker studies on CMT1X and CMT2A and gene discovery.
It’s wonderful to be able to plan events again and we are hard at it. That doesn’t mean that all
events—branch meetings, Patient/Family Conferences and monthly educational sessions—will all
of a sudden take place in real life. Virtual meetings have proved invaluable and we will continue
holding them. For a while you’ll probably be seeing a hybrid model—some events like walks in
person and others like branch meetings online. Whatever the format, we sincerely hope you’ll take
advantage of the CMTA’s many opportunities to connect.
Best,

CMTA Chief Executive Officer

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