Page 3 - 2020 Winter CMTA Report

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

DEAR FRIENDS,

he New Year is always a time for taking stock. It’s also a good
T time for making changes, and this year it puts us in mind of the
great Mahatma Gandhi, who said, “Be the change you want to see in
the world.” The change we want to see in the world is, of course, the
complete and total eradication of CMT. It’s what inspires us, drives us
and unites us.
At the individual level, change takes many different forms, some
of which we’re featuring in this issue of The CMTA Report. Change
might take the form of new, healthier habits and certainly we applaud those. If you’re capable,
the exercise program that Board Member Steve O’Donnell developed specifically for people
with CMT is a great way to start the New Year.

Change can also take the form of an attitude adjustment, and we’re also spotlighting two
individuals who changed their lives after changing their attitudes. Jamal Hill, the #1 Paralympic
swimmer in the United States in the 50-meter freestyle, recounts his road to the 2020
Paralympics in Tokyo and how it began with a change in attitude. Jamal struggled for years
with the secret of his CMT1X and says that only when he stopped treating it like a curse did
the “blessings and opportunities start flowing.”
Like Jamal, Julie Stone was in denial about her CMT for most of her life—until she attended
a CMTA Patient/Family Conference in Seattle in 2018. It changed her world, she says, break-
ing down her own stereotypes about what people with disabilities are like. In a heartbeat, she
changed from a CMT denier to a CMT “defier.”

The CMTA is changing, too. We added new members to our CMTA Board of Directors and
CMTA Advisory Board in 2019, and we fully anticipate that they will help us be the change we
want to see. Another person who is helping us change is Mark Scheideler, the expert guiding
the CMTA’s drug discovery process. You can read about his achievements in his profile on p. 8.

Because technology is ever-changing, we also bring you news in this issue about potentially
game-changing new research in gene editing being funded by the CMTA.

We’re excited about the changes that the drug discovery process will bring in 2020.
We wish you the happiest New Year and a change for the better.
All my best,

AMY GRAY, Chief Executive Officer

WINTER 2020 THE CMTA REPORT 3