Page 2 - Fall 2020 CMTA Report

CMTA LEADERSHIP
Amy J. Gray, CEO
BOARD OF DIRECTORS ADVISORY BOARD
CMTA STAR ALLIANCE
Gilles Bouchard, Chairman Teresa Carroll, MS, PhD Elizabeth Misener, PhD,
PARTNERS: Gary Gasper, Treasurer Gregory Carter, MD, MS LMSW
Herb Beron, Secretary Ken Cornell, CO James Nussbaum, PT, PhD,
ACCELERON PHARMA Dan Chamby Bob DeRosa SCS, EMT
David Coldiron Katy Eichinger, PT, DPT, NCS Sabrina Paganoni, MD, PhD
ARQ GENETICS Thomas W. Dubensky, Jr., PhD Ashraf Elsayegh, MD, FCCP Glenn Pfeffer, MD
Laura Fava Tim Estilow, OTR/L Kenneth Raymond
CHARLES RIVER Alan Korowitz Shawna Feely, MS, CGC Clark Semmes
David Norcom Valery Hanks, OTR/L, C/NDT Carly Siskind, MS, CGC
GENZYME, A SANOFI COMPANY Steve O’Donnell Sarah Kesty Greg Stilwell, DPM
Chris Ouellette Kate Lair David Tannenbaum, LCSW
HUMANFIRST THERAPEUTICS LLC Elizabeth Ouellette Bethany Noelle Meloche Amy Warfield, PT, DPT
Kevin Sami Tom Meloche Evan Zeltsar
HORIZON DISCOVERY Phyllis Sanders, Esq. David Misener, BSc (HK),
Steven Scherer, MD, PhD CPO, MBA
IONIS PHARMACEUTICALS Michael Shy, MD
John Svaren, PhD
INFLECTIS BIOSCIENCE Special Advisor to the Board
Bruce Chizen
THE JACKSON LABORATORY
NCATS (NIH) STAR ADVISORY BOARD
John Svaren, PhD, Chair, Scientific Expert Board
NEW YORK STEM CELL FOUNDATION Mark Scheideler, PhD, Chair, Therapy Expert Board
Michael E. Shy, MD, Co-Chair, Clinical Expert Board
PASSAGE BIO Mary Reilly, MD, Co-Chair, Clinical Expert Board
PSYCHOGENICS CMTA STAFF
REGENACY PHARMACEUTICALS Jonah Berger National Youth Programs Manager, jonah@cmtausa.org
Kim Magee Director of Finance and Administration, kim@cmtausa.org
RENOVO NEURAL, INC. Leslie Nagel Marketing Coordinator, leslie@cmtausa.org
Laurel Richardson Director of Community Outreach, laurel@cmtausa.org
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
Riding 4 CMT page 12

INSIDE THIS ISSUE:
RESEARCH LIVING WITH CMT
Board Approves $360,000 in Grants ...........7 Foot Surgery Consensus........................10
1A Research Roundup............................8 “Never Say Never” ..............................13
CMTA Partners with Pharnext..................11 Ebikes for Fun and Mobility....................16
“Sole-Searching” for Shoes ...................20
CMT COMMUNITY City Living Aids Exercise .......................22
Why I Give ........................................14 Ask David .........................................23
RIP Anthony Zahn................................17
CMTA YOUTH
FUN AND FUNDRAISERS Camp Footprint Goes Virtual ....................4
Virtual Vermont Cycle 4 CMT ..................12
Awareness Month................................18
Team Julia Swims Again .......................19
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. 3 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.