Page 2 - 2020 Spring CMTA Report

CMTA LEADERSHIP
Amy J. Gray, CEO
BOARD OF DIRECTORS ADVISORY BOARD
CMTA STAR ALLIANCE
Gilles Bouchard, Chairman Gregory Carter, MD, MS Elizabeth Misener, PhD,
PARTNERS: Gary Gasper, Treasurer Ken Cornell, CO LMSW
Herb Beron, Secretary Bob DeRosa James Nussbaum, PT, PhD,
ACCELERON PHARMA David Coldiron Katy Eichinger, PT, DPT, NCS SCS, EMT
Thomas W. Dubensky, Jr., PhD Ashraf Elsayegh, MD, FCCP Sabrina Paganoni, MD, PhD
ARQ GENETICS Laura Fava Tim Estilow, OTR/L Glenn Pfeffer, MD
Alan Korowitz Shawna Feely, MS, CGC Clark Semmes
CHARLES RIVER David Norcom Valery Hanks, OTR/L, C/NDT Carly Siskind, MS, CGC
Steve O’Donnell Sarah Kesty Greg Stilwell, DPM
GENZYME, A SANOFI COMPANY Chris Ouellette Kate Lair David Tannenbaum, LCSW
Elizabeth Ouellette Sean McKale, CO, LO Amy Warfield, PT, DPT
HUMANFIRST THERAPEUTICS LLC Kevin Sami Bethany Noelle Meloche Evan Zeltsar
Phyllis Sanders, Esq. Tom Meloche
HORIZON DISCOVERY Steven Scherer, MD, PhD David Misener, BSc (HK),
Michael Shy, MD CPO, MBA
IONIS PHARMACEUTICALS John Svaren, PhD
Special Advisor to the Board
INFLECTIS BIOSCIENCE Bruce Chizen
THE JACKSON LABORATORY STAR ADVISORY BOARD
John Svaren, PhD, Chair, Scientific Expert Board
NCATS (NIH) Mark Scheideler, PhD, Chair, Therapy Expert Board
Michael E. Shy, MD, Co-Chair, Clinical Expert Board
NEW YORK STEM CELL FOUNDATION Mary Reilly, MD, Co-Chair, Clinical Expert Board
PASSAGE BIO CMTA STAFF
PSYCHOGENICS Jonah Berger National Youth Programs Manager, jonah@cmtausa.org
Kim Magee Director of Finance and Administration, kim@cmtausa.org
REGENACY PHARMACEUTICALS Leslie Nagel Marketing Coordinator, leslie@cmtausa.org
Laurel Richardson Director of Community Outreach, laurel@cmtausa.org
RENOVO NEURAL, INC. Jeana Sweeney Director of Development, jeana@cmtausa.org

CMTA CORPORATE
PARTNERS:
AETREX WORLDWIDE, INC.
ALLARD, USA
BALANCE WALKING
FOOT SOLUTIONS
GENEDX
HANGER CLINIC
KINETIC RESEARCH
TURBOMED ORTHOTICS CMT Quilt Still Traveling
Story on page 9

INSIDE THIS ISSUE:
RESEARCH CMT COMMUNITY
CMT1B, 2E Research Projects Funded.........6 CMTActive Powers Up...........................12
ACE-083 Study Discontinued ....................8 Teen Joins Advisory Board .....................17
Branch Leader Jeannie Zibrida................17
LIVING WITH CMT New COE at UCSF................................22
HNPP Explained ...................................7
EMGs and NCSs..................................10
Yoga for Balance and Stretching ..............14
Ask David .........................................21

CMTA Repor t Association, a registered non-profit 501(C)(3) health organization.
T H E The CMTA Report is published by the Charcot-Marie-Tooth
© 2020, The CMTA. All rights reserved under International and
Pan American Copyright conventions. No part of this newsletter
Marcia Semmes Executive Editor may be reproduced in any form or by any electronic or mechanical
OUR MISSION: To support the development of Karlyn Rosen Aires Designer means, including information storage and retrieval systems, without
Dana Schwertfeger Contributing Editor permission in writing from the publisher. The opinions expressed in
new drugs to treat CMT, to improve the quality of life the newsletter are not necessarily those of the Charcot-Marie-Tooth
for people with CMT and, ultimately, to find a cure. ISSN #1067-0181 Vol. 35, No. 2 Association. The material is presented for educational purposes
only and is not meant to diagnose or prescribe. Always consult
OUR VISION: A World Without CMT. Email the CMTA at your professional advisers as to how medical, legal or financial
information in The CMTA Report pertains to you. The CMTA
info@cmtausa.org assumes no liability for any information in The CMTA Report.