Page 2 - 2020 Winter CMTA Report

CMTA LEADERSHIP
Amy J. Gray, CEO
BOARD OF DIRECTORS ADVISORY BOARD
CMTA STAR ALLIANCE
Gilles Bouchard, Chairman Jonah Berger David Misener, BSc (HK),
PARTNERS: Gary Gasper, Treasurer Gregory Carter, MD, MS CPO, MBA
Herb Beron, Secretary Ken Cornell, CO Elizabeth Misener, PhD,
ACCELERON PHARMA David Coldiron Bob DeRosa LMSW
Thomas W. Dubensky, Jr., PhD Katy Eichinger, PT, DPT, NCS James Nussbaum, PT, PhD,
ARQ GENETICS Laura Fava Ashraf Elsayegh, MD, FCCP SCS, EMT
Alan Korowitz Tim Estilow, OTR/L Sabrina Paganoni, MD, PhD
CHARLES RIVER David Norcom Shawna Feely, MS, CGC Glenn Pfeffer, MD
Steve O’Donnell Valery Hanks, OTR/L, C/NDT Clark Semmes
GENZYME, A SANOFI COMPANY Chris Ouellette Sarah Kesty Carly Siskind, MS, CGC
Elizabeth Ouellette Kate Lair Greg Stilwell, DPM
HUMANFIRST THERAPEUTICS LLC Kevin Sami Sean McKale, CO, LO David Tannenbaum, LCSW
Phyllis Sanders, Esq. Bethany Noelle Meloche Amy Warfield, PT, DPT
HORIZON DISCOVERY Steven Scherer, MD, PhD Tom Meloche
Michael Shy, MD
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 Andi Cosby National Events Manager, andi@cmtausa.org
Leslie Nagel Marketing Coordinator, leslie@cmtausa.org
REGENACY PHARMACEUTICALS Kim Magee Director of Finance and Administration, kim@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
SPREADING AWARENESS See page 13
KINETIC RESEARCH
TURBOMED ORTHOTICS

INSIDE THIS ISSUE:
RESEARCH FUN AND FUNDRAISERS
Gene Editing Studies for Type 2 ................6 Walk This Way ...................................12
NIH Awards INC $7.2 Million Youth of Tomorrow Shine at NYC Gala .......18
for work on CMT...................................7
Game-Changer Profile: LIVING WITH CMT
Drug Therapy Expert Mark Scheideler .........8 New Video Series on Exercise for CMTers ....4
Robert Burgess, PhD Joins Adapt, Then Ski ..................................10
SAB ..................................................9 Surgical Correction of the CMT Foot..........14
CMT COMMUNITY
CMT Awareness Month .........................13
Atlanta PFC .......................................15

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. 1 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.