Page 2 - 2019 Fall CMTA Report

CMTA LEADERSHIP
Amy J. Gray, CEO
BOARD OF DIRECTORS ADVISORY BOARD
CMTA STAR ALLIANCE
Gilles Bouchard, Chairman Jonah Berger Elizabeth Misener, PhD,
PARTNERS: Gary Gasper, Treasurer Gregory Carter, MD, MS LMSW
Herb Beron, Secretary Ken Cornell, CO James Nussbaum, PT, PhD,
ACCELERON PHARMA Thomas W. Dubensky, Jr., PhD Bob DeRosa SCS, EMT
Laura Fava Katy Eichinger, PT, DPT, NCS Sabrina Paganoni, MD, PhD
ARQ GENETICS Alan Korowitz Ashraf Elsayegh, MD, FCCP Glenn Pfeffer, MD
David Norcom Tim Estilow, OTR/L Clark Semmes
CHARLES RIVER Steve O’Donnell Shawna Feely, MS, CGC Carly Siskind, MS, CGC
Chris Ouellette Valery Hanks, OTR/L, C/NDT Greg Stilwell, DPM
GENZYME, A SANOFI COMPANY Elizabeth Ouellette Sarah Kesty David Tannenbaum, LCSW
Kevin Sami Kate Lair Amy Warfield, PT, DPT
HUMANFIRST THERAPEUTICS LLC Phyllis Sanders, Esq. Sean McKale, CO, LO
Steven Scherer, MD, PhD Bethany Noelle Meloche
HORIZON DISCOVERY Michael Shy, MD Tom Meloche
John Svaren, PhD David Misener, BSc (HK),
IONIS PHARMACEUTICALS Lawrence Wrabetz, MD CPO, MBA
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

Lessons
CMTA CORPORATE from Camp
PARTNERS: Footprint
See page 14
AETREX WORLDWIDE, INC.
ALLARD, USA
BALANCE WALKING
FOOT SOLUTIONS
GENEDX
HANGER CLINIC
INSIDE THIS ISSUE
KINETIC RESEARCH RESEARCH
TURBOMED ORTHOTICS Type 2 Update and Strategy...............................................................................4
Gene Therapy for CMT2A..................................................................................5
CMTA Grant for 2E ..........................................................................................5
CMT COMMUNITY
Why I Give: Bruce Chizen..................................................................................7
Remembering Vicki Pollyea.............................................................................16
FUN AND FUNDRAISERS
Why I Fundraise: Whitney Wright ......................................................................12
Vermont Cycle 4 CMT.....................................................................................18
Walk This Way: Southern Connecticut .................................................................18
LIVING WITH CMT
Challenged Athletes Foundation Grants.................................................................9
Wrist-Hand Orthotics .....................................................................................10
Parenting a CMTer ........................................................................................21
Ask David...................................................................................................23
CMTA YOUTH
CMTA Youth Council Appointed .........................................................................11
Camp Footprint ............................................................................................14

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
© 2019, 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. 34, 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.