Page 3 - 2021 Winter CMTA Report

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

DEAR FRIENDS,

’m sure I’m not the only one who was happy to see 2020 end. It’s more
Ithan a little ironic that a number depicting clarity of vision came to
represent a year filled with confusion bordering on chaos. But with your
help, the CMTA not only persevered, it thrived.
The CMTA community thrived because our members share our
passion for our mission—finding a cure for CMT. The pandemic did
nothing to diminish that passion—though it did force us to pivot to
new ways of holding branch meetings, walking 4 CMT and shifting to
research that could be done in a bubble. But, as David Tannenbaum
noted in our special issue on COVID-19, people with CMT have had to deal with strangeness and
adversity all of their lives. According to David, “The uncertainty and fear of the COVID-19 crisis is
not all that different from the uncertainty and fear we face in living with CMT.”

This issue is dedicated to everyone—men, women and children, teachers, doctors and
writers—who is helping the CMTA by spreading the word about CMT. It’s a constant, ongoing
battle to educate the many, many people who still have not heard of the disease. But it’s a vital
step toward finding a cure—identify the problem, make people aware of the problem and ask
people to help fund a cure. Dave Loy got a massive shark tattoo on his arm so that he can talk
to people about CMT when they ask about it. Rick Clemente makes and gives away gorgeous
wooden pens. When people ask about the pens, he says the price is a donation to the CMTA.
Sarah Kesty entered her lesson plan about CMT into a contest, and Jeff Seitzer is publishing his
memoir about CMT. Filmmaker Crystal Emery tells us how she prevails over her CMT despite its
impact on her arms, legs and respiratory system.

We’ll be bringing you more in-depth information on STAR’s progress in an upcoming special
issue, but for now I’d like to highlight a few examples of the tremendous research progress made
in 2020, including:
• $2.5 million invested in research
• 19 joint preclinical treatment studies this year with leading pharma/biotechs developing
treatments for CMT
• 32 total alliance partners from top biotech, pharma and gene therapy labs around the world
• 50 active research projects and studies and eight more projects approved in recent months
• More than 30 of the leading CMT scientists and gene therapy experts from around the globe
working with our STAR Advisory Board
• Research tools for biotech companies to use in testing potential therapies for types CMT1,
CMT2, CMT4 and CMTX
• Investments in the discovery of new genes that cause CMT
We look forward, as always, to a brighter future for everyone with CMT. And we wish each of
you a very Happy New Year.
With warm regards,

AMY GRAY, Chief Executive Officer

WINTER 2021 THE CMTA REPORT 3