Page 2 - 2021 Winter CMTA Report

CMTA LEADERSHIP
Amy J. Gray, CEO
BOARD OF DIRECTORS ADVISORY BOARD
CMTA STAR ALLIANCE
Gilles Bouchard, Chairman Teresa Carroll, MS, PhD
PARTNERS: Gary Gasper, Treasurer Gregory Carter, MD, MS
Herb Beron, Secretary Ken Cornell, CO
Dan Chamby Bob DeRosa
ACCELERON PHARMA David Coldiron Katy Eichinger, PT, DPT, NCS
Thomas W. Dubensky, Jr., PhD Ashraf Elsayegh, MD, FCCP
ARQ GENETICS Laura Fava Tim Estilow, OTR/L
Alan Korowitz Shawna Feely, MS, CGC
CHARLES RIVER David Norcom Valery Hanks, OTR/L, C/NDT
Steve O’Donnell Sarah Kesty
GENZYME, A SANOFI COMPANY Chris Ouellette Kate Lair
Elizabeth Ouellette Bethany Noelle Meloche
HUMANFIRST THERAPEUTICS LLC Kevin Sami Tom Meloche
Phyllis Sanders, Esq. David Misener, BSc (HK), CPO, MBA
HORIZON DISCOVERY Steven Scherer, MD, PhD Elizabeth Misener, PhD, LMSW
Michael Shy, MD Christine Murray, MD
IONIS PHARMACEUTICALS John Svaren, PhD James Nussbaum, PT, PhD, SCS, EMT
Special Advisor to the Board Sabrina Paganoni, MD, PhD
Glenn Pfeffer, MD
INFLECTIS BIOSCIENCE Bruce Chizen
Kenneth Raymond
Clark Semmes
THE JACKSON LABORATORY STAR ADVISORY BOARD Carly Siskind, MS, CGC
John Svaren, PhD, Chair, Scientific Expert Board Greg Stilwell, DPM
NCATS (NIH) Mark Scheideler, PhD, Chair, Therapy Expert Board David Tannenbaum, LCSW
Michael E. Shy, MD, Co-Chair, Clinical Expert Board Amy Warfield, PT, DPT
NEW YORK STEM CELL FOUNDATION Mary Reilly, MD, Co-Chair, Clinical Expert Board Evan Zeltsar
PASSAGE BIO
CMTA STAFF
PSYCHOGENICS
Jonah Berger National Youth Programs Manager, jonah@cmtausa.org
REGENACY PHARMACEUTICALS Kim Magee Director of Finance and Administration, kim@cmtausa.org
Leslie Nagel Marketing Coordinator, leslie@cmtausa.org
RENOVO NEURAL, INC. 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
Walking Together Apart page 9

INSIDE THIS ISSUE: T H E CMTA Repor t
RESEARCH
Board Approves Grants for Inhibitor Work .............7 Marcia Semmes Executive Editor
Karlyn Rosen Aires Designer
CMT STORIES Dana Schwertfeger Contributing Editor
Filmmaker Doesn’t Let CMT Stop Her......................6
The CMTA Report is published by the
Educator Seeks Input..............................................19 Charcot-Marie-Tooth Association, a registered
Widower Makes/Sells Pens for CMTA....................25 non-profit 501(C)(3) health organization.
© 2021, The CMTA. All rights reserved under
Former Pastor Spreads Word About CMT..............28 International and Pan American Copyright
conventions. No part of this newsletter may
LIVING WITH CMT be reproduced in any form or by any
COVID-19 Vaccine ....................................................4 electronic or mechanical means, including
information storage and retrieval systems,
New Genetic Tools for Family Planning ................10 without permission in writing from the
Foot Surgery Part 4 ................................................20 publisher. The opinions expressed in the
newsletter are not necessarily those of the
CMTA COMMUNITY Charcot-Marie-Tooth Association. The material
is presented for educational purposes only
New Advisory Board Members.................................8
and is not meant to diagnose or prescribe.
Why I Give: Howard Landis.....................................14 Always consult your professional advisers
New Centers of Excellence .....................................16 as to how medical, legal or financial
information in The CMTA Report pertains to
OUR MISSION: To support the development of Patient/Family Conference Zoomed .......................23 you. The CMTA assumes no liability for any
information in The CMTA Report.
FUN AND FUNDRAISING
new drugs to treat CMT, to improve the quality of life
Walks 4 CMT Raised $180,000 .................................9 ISSN #1067-0181 Vol. 36, No. 1
for people with CMT and, ultimately, to find a cure.
CMTA YOUTH Email the CMTA at
OUR VISION: A World Without CMT. Youth Council Gears Up Fundraising......................12 info@cmtausa.org