Page 2 - 2020 Summer 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 Dan Chamby Katy Eichinger, PT, DPT, NCS SCS, EMT
David Coldiron Ashraf Elsayegh, MD, FCCP Sabrina Paganoni, MD, PhD
ARQ GENETICS Thomas W. Dubensky, Jr., PhD Tim Estilow, OTR/L Glenn Pfeffer, MD
Laura Fava Shawna Feely, MS, CGC Clark Semmes
CHARLES RIVER Alan Korowitz Valery Hanks, OTR/L, C/NDT Carly Siskind, MS, CGC
David Norcom Sarah Kesty Greg Stilwell, DPM
GENZYME, A SANOFI COMPANY Steve O’Donnell Kate Lair David Tannenbaum, LCSW
Chris Ouellette Bethany Noelle Meloche Amy Warfield, PT, DPT
HUMANFIRST THERAPEUTICS LLC Elizabeth Ouellette Tom Meloche Evan Zeltsar
Kevin Sami David Misener, BSc (HK),
HORIZON DISCOVERY Phyllis Sanders, Esq. CPO, MBA
Steven Scherer, MD, PhD
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

Staying Fun and Raising Funds
FUNATHLON coverage on page 13

INSIDE THIS ISSUE:
RESEARCH FUN AND FUNDRAISERS
New CMT Gene Identified........................4 Oxford Funathlon.................................13
SPECIAL COVID-19 COVERAGE LIVING WITH CMT
Dealing With Stress...............................7 Nutrition for CMTers.............................16
Telemedicine Appointments for CMT ..........8 DASA Workouts ..................................18
Connecting Community Online ................10 Hind Foot Fusion.................................21
Intubation and Ventilation......................12 The Courage to Wear Shorts ...................23
CMT COMMUNITY CMTA YOUTH
Why We Give .....................................14 Teen Sells Tees for CMT........................26

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.