Page 3 - 2020 Spring CMTA Report

A M E S S A G E F R O M T H E C E O

DEAR FRIENDS,

s I write this letter, the coronavirus has turned the world upside
Adown. One thing that hasn’t changed, though, is the CMTA’s
commitment to provide help and hope to our community.
Circumstances demand that we adapt, however, so the forms
of help are going to change for a while. All CMTA branch meetings,
walks and events are postponed until further notice. Check our
website (www.cmtausa.org) to find out when they’ll resume.

Until that happy day, we’re moving operations online, including a live helpline for the
CMT community, LiveLine. Staffed by volunteers who know their CMT, LiveLine is a way for
community members to talk through their questions on CMT and COVID-19. The helpline will
not provide medical advice but will direct people to resources and just be there for them
during this time of uncertainly. The line will be staffed from 2–5 p.m. PT/Monday-Friday.
The phone number is 877-4CMTFAQ (877-426-8327).
We’re also launching some virtual programming for the community so that people
can participate from the safety and comfort of their homes. In our first session, two leading
CMT clinicians answered questions on COVID-19 and CMT. We’ll be running weekly virtual
programs in the areas of education, exercise and emotional well-being. Please make sure you
are connected with the CMTA via Facebook to view the upcoming Facebook LIVE sessions.
The link is www.facebook.com/CMTAssociation/.
Other things have not changed. Our research—and the hope for a cure—continues and
you’ll read in this issue about two exciting new projects we’ve just funded—a gene therapy
project for CMT2E and a biomarkers project for CMT1B.
This issue also contains amazing stories from CMT experts explaining HNPP, tendon
transfers and nerve conduction studies. And, continuing our ongoing efforts to provide tips
for living with CMT, we have stories about help for hands and a newly launched Facebook
Group called CMTActive. I’d like to leave you with a few words from CMTActive moderator
and Houston Branch co-leader Benjy Hershorn, who says, “I truly believe the lessons learned
in living with a chronic illness in general, and with CMT specifically, can help us cope with
the uncertainty of the current coronavirus crisis.”
All my best,

AMY GRAY, Chief Executive Officer

SPRING 2020 THE CMTA REPORT 3