Professional Documents
Culture Documents
CMTA
THE
Re p or t
www.cmtausa.org
8 > Walking
Improves
Fitness
12 > Patients and
Industry Leaders
Drives Research
14 > Matters When
Choosing
Foot Surgery
2 THE CMTA REPORT WINTER 2018
CMTA LEADERSHIP
Amy J. Gray, CEO ADVISORY BOARD
Jonah Berger
BOARD OF
Gregory Carter, MD, MS
DIRECTORS
Bob DeRosa
Gilles Bouchard, Chairman Katy Eichinger, PT, DPT, NCS
Gary Gasper, Treasurer Tim Estilow, OTR/L
Herb Beron, Secretary Shawna Feely, MS, CGC
Thomas W. Dubensky, Jr., PhD Valery Hanks, OTR/L, C/NDT
CMTA CORPORATE
Laura Fava Sarah Kesty
PA RT N E R S : Alan Korowitz Kate Lair
Steve O’Donnell Sean McKale, CO, LO
Bethany Noelle Meloche
AETREX WORLDWIDE, INC. Chris Ouellette
Tom Meloche
Elizabeth Ouellette
ALLARD, USA Phyllis Sanders, Esq. David Misener, BSc (HK), CPO, MBA
Steven Scherer, MD, PhD Elizabeth Misener, PhD, LMSW
BALANCE WALKING Michael Shy, MD James Nussbaum, PT, PhD, SCS, EMT
John Svaren, PhD Sabrina Paganoni, MD, PhD
FOOT SOLUTIONS Lawrence Wrabetz, MD Glenn Pfeffer, MD
Clark Semmes
GENEDX Special Advisors Carly Siskind, MS, CGC
to the Board Greg Stilwell, DPM
HANGER CLINIC Bruce Chizen David Tannenbaum, LCSW
Patrick Livney Amy Warfield, PT, DPT
INVITAE STAR ADVISORY BOARD
KINETIC RESEARCH John Svaren, PhD, Chair, Scientific Expert Board
Mark Scheideler, PhD, Chair, Therapy Expert Board
SWEETRICIA’S GRANOLA Michael E. Shy, MD, Co-Chair, Clinical Expert Board
Mary Reilly, MD, Co-Chair, Clinical Expert Board
TURBOMED ORTHOTICS
CMTA STAFF
CMTA ALLIANCE Andi Cosby National Events Manager, andi@cmtausa.org
Frank Gaidjunas Director of Marketing and Communications, frank@cmtausa.org
PA RT N E R S : Michelle Hayes National Branch and Community Relations Manager, michelle@cmtausa.org
Leslie Nagel Marketing Coordinator, leslie@cmtausa.org
ARQ GENETICS Kim Magee Director of Finance and Administration, kim@cmtausa.org
Jeana Sweeney Director of Community Engagement, jeana@cmtausa.org
CHARLES RIVER
GENZYME, A SANOFI COMPANY Taylor Hill keeps
racing forward
HUMANFIRST THERAPEUTICS LLC with CMT.
HORIZON DISCOVERY See page 19
IONIS PHARMACEUTICALS
THE JACKSON LABORATORY
NCATS (NIH)
NEW YORK STEM CELL FOUNDATION
PSYCHOGENICS
RENOVO NEURAL, INC.
CMTARe p or t
THE The CMTA Report is published quarterly by the Charcot-Marie-Tooth
Association, a registered non-profit 501(C)(3) health organization.
© 2018, The CMTA. All rights reserved under International and
Pan American Copyright conventions. No part of this newsletter
Kerry Ludlam Executive Editor may be reproduced in any form or by any electronic or mechanical
Karlyn Rosen Aires Designer means, including information storage and retrieval systems, without
OUR MISSION: To support the development of Dana Schwertfeger Contributing Editor permission in writing from the publisher. The opinions expressed in
the newsletter are not necessarily those of the Charcot-Marie-Tooth
drugs to treat CMT, to improve the quality of life for ISSN #1067-0181 Vol. 33, No. 1 Association. The material is presented for educational purposes
only and is not meant to diagnose or prescribe. While there is no
people with CMT and, ultimately, to find a cure. Email the CMTA at substitute for professional medical care for CMT disorders, these
briefs offer current medical opinion that the reader may use to aid
OUR VISION: A World Without CMT. info@cmtausa.org and supplement a doctor’s treatment.
WINTER 2018 THE CMTA REPORT 3
DEAR FRIENDS, This year, we are further refining our patient engage-
ment strategy for research. Patients have always been at
O
n November 2 and 3, practice and experiences sup-
2017, the CMTA hosted a ported by research to identify
meeting of physical and practice points to share with the
occupational therapists CMTA community. We plan to
from CMTA Centers of include these and what we under-
Excellence around the world. stand regarding the natural
Therapists from 12 different states progression of CMT to create a
and four countries came together guide for patients to provide to
in Phoenix, Arizona to discuss the community clinicians. This guide
assessment and management of can then be used to assist patients
individuals with Charcot-Marie- in managing CMT symptoms
Tooth disease (CMT). and rehabilitation needs.”
Five experts in the field— Following an overview of
Joshua Burns, PhD, Gita CMT and an update on the work
Ramdharry, PhD, Katy Eichinger, of the Inherited Neuropathies
PT, PhD, DPT, Tim Estilow, Consortium by Michael Shy,
OTR/L, and Amy Warfield, PT, MD, the development, validation
DPT—led the meeting of 17 and use of disease-specific assess-
physical therapists and four occu- ment scales, such as CMTNS,
pational therapists who are all CMTPeds and CMTHI were pre-
dedicated and interested in work- sented. Joshua Burns, Gita
ing together to bring the best Ramdharry, Katy Eichinger, Tim
available care to individuals with Estilow and Amy Warfield pre-
CMT. sented on symptoms of CMT
“We realize that many per- that have been noted to have an
sons affected by CMT are not impact on quality of life. They
geographically near a CMTA covered topics including mobility,
Center of Excellence; therefore, balance, foot and ankle weakness,
they do not have access to a clini- hand function, and health and
cian who consistently works with wellness topics such as exercise,
individuals affected by CMT,” pain and fatigue. Discussions
says CMTA board member Eliza- among the attendees identified
beth Ouellette. “Our goal was to the practice points highlighted
have these experts discuss clinical on the facing page. h
[ TOGETHER WITH Acceleron, Pharnext and TheraBand, the CMTA is proud to have sponsored this meeting of allied health care professionals,
and we look forward to publishing the assessment and treatment recommendations in a guide that you can share with your local care team. ]
WINTER 2018 THE CMTA REPORT 5
D I S C U S S I O N HIGHLIGHTS
DR. AMY WARFIELD reviewed mobility assessment throughout the lifespan. Therapists agreed
that risk of falls, orthotic assessment and assistive device assessment should be included within
patient evaluation. The goal of a physical or occupational therapist working with a person with
CMT should be to provide strategies and compensatory techniques for maintaining and improv-
ing a person’s ability to participate in activities of daily living and all environments for as long
as possible.
DR. KATY EICHINGER presented on balance assessment and intervention strategies for individu-
als with CMT. Clinicians agreed that individuals with CMT may improve their balance abilities
with therapeutic intervention, such as education, falls management and task specific interven-
tions to address the specific problems the patients are experiencing.
DR. JOSHUA BURNS presented on assessment and interventions for foot and ankle weakness.
His team recently conducted a randomized controlled trial showing that six months of progres-
sive resistance exercise of ankle dorsiflexors was safe and effective in delaying strength loss in
children and adolescents with CMT (www.thelancet.com/journals/lanchi/article/ PIIS2352-
4642(17)30013-5/abstract). In-shoe foot orthoses and ankle-foot orthoses are also often
prescribed for people with CMT (www.mcri.edu.au/news/practice-brief-charcot-marie-tooth-disease).
Clinicians agreed that it would be helpful to convene a working group to help determine who
needs what and when.
DR. GITA RAMDHARRY presented on health and wellness, including exercise and managing
pain and fatigue. The group agreed that there is evidence of good results from strengthening
proximal muscles—muscles situated nearer to the center of the body—for this patient popula-
tion. There is also promising evidence of peripheral muscles—muscles nearer the ends of the
limbs—continuing to stay strong in children who have the proper exercise program. Providing
people with optimal strategies to implement an appropriate exercise program and providing the
support for these patients was also discussed.
from Pilates and Movement Therapy some falls, including a couple that
have resulted in a dislocated elbow
and sore knee, as well a hip
replacement. I’m always delighted
BY LAVINIA MAGLIOCCO, PILATES INSTRUCTOR AT EQUIPOISE
at how quickly N. bounces back,
and how her dedication to Pilates
F
ourteen years ago, I wrote an qualities which have contributed to pays off in resilience. I have also
article for the CMTA on my the success of our work together. worked with clients who have
work as an integrated exercise One of the most important other neurological disorders,
instructor with N., a client aspects of our work is stretching, including cerebral palsy and Guil-
who has CMT. In the inter- especially in keeping her calves, lain-Barré. It’s important to stress
vening years, she and I have hamstrings, quadriceps, adductors, that while Pilates can be of help in
continued to work together in my IT bands and psoas muscles flexi- all of these conditions, the extent
Pilates studio, and I can now speak ble and strong. Twice a week, N. of help Pilates will afford depends
with more confidence on the long- uses the Reformer, Wunda Chair, on the dedication and passion of
term benefits of this practice. Cadillac and Ladder Barrel Pilates both the client and teacher. It’s
N. has CMT Type 1A, which machines. Because CMT affects also important to check with your
appeared in her 40s during an dorsiflexion, we do a lot of work doctor before starting any new fit-
active career as a school principal. to keep her shin muscles as awake ness routine, including Pilates.
At the time of diagnosis, she was and strong as possible. She had While people with neurologi-
told to be prepared to be in a surgery in her left knee prior to cal disorders like CMT have some
wheelchair within 10 years. Now, meeting me, and she had a right specific challenges, in the end, they
at age 65, not only is N. not in a hip replacement two years ago due share many of the same issues as
wheelchair, but she also travels fre- to arthritis in the hip joint. Leg those without neurological chal-
quently to different countries and and hip strengthening exercises are lenges. It’s important that we never
continues to enjoy an active life, also part of our weekly routines. lose sight of our shared humanity
albeit with some limitations. Our strategy includes main- as we navigate life together. h
From the very beginning, I taining spinal flexibility as well as Lavinia Magliocco is a certified Pilates
treated N. as I would any other building core strength in three instructor and specializes in chronic injuries
client. I never assumed there were planes of movement. This is crucial and pre-and-post-op rehabilitation and
things she wouldn’t be able to do. for balance and agility. Because N. conditioning. She teaches dancers and
non-dancers at her studio, Equipoise, in
Instead, I found ways to make cannot rely on her feet and ankles
Portland, Oregon, where she combines
movements and exercises possible for proprioception, she has learned various disciplines and a holistic approach
and safe for her. She is naturally to feel where her body is in space to encourage body awareness, integrated
adventurous and curious, two with accuracy and respond appro- movement and well-being.
WINTER 2018 THE CMTA REPORT 7
!
Ms. Patricia Huntsman ANNETTE GILBERT PAM LAUGHLIN BREANNE PASCOE BRIAN AND JACKIE SHEA Ms. Deborah Gillis
Mr. and Mrs. David Shepard Mr. Dennis Loebs Ms. Charlotte Jackson Ms. Lesley Pascoe Mr. and Mrs. Albert Willey Mr. Lester Hair
C M TA R E M E M B R A N C E S
Your gift to the CMTA can honor a living person or the memory of a friend or loved one. Acknowledgment cards will be mailed by the CMTA on your behalf. Donations are listed
in the newsletter and are a wonderful way to keep someone’s memory alive or to commemorate happy occasions like birthdays and anniversaries. They also make thoughtful
thank-you gifts. You can participate in the memorial and honorary gift program of the CMTA by completing the form below and faxing it with your credit card number and
signature or mailing it with your check to: CMTA, PO Box 105, Glenolden, PA 19036.
S
ince launching its Strategy to
THE TRANSFORMATION PROJECT
Accelerate Research (STAR),
the CMTA continues to
shorten the timeline for
finding a treatment—and I n 2012, the STAR Advisory Board (SAB) decided that
to further validate candidate drugs, researchers needed
human cell lines. The project transformed human skin and
eventually a cure—for CMT. Our
development of a toolkit of assays blood cells from CMT patients into stem cells, and from
(tests), animal models and CMT there, into neurons (nerve cells) and Schwann cells (which
cell lines has earned the CMTA a make myelin). STAR developed CMT1A and CMT2A cell
sterling reputation in the pharma- lines for investigative use and made them available to
ceutical and biotechnology researchers around the world.
industries, leading top pharmaceu-
tical companies to seek
partnerships with the CMTA. In addition to partnerships the core of all we do. 2018
Those partnerships will be particu- with premier scientists, doctors promises to be a big year for
larly important as we move and companies, we are also explor- patient engagement in research.
forward with clinical trials, always ing new ways to involve people We look forward to sharing more
the riskiest and most expensive living with CMT in our research. information about our plans later
part of drug delivery. After all, people with CMT are at this year.
With the world’s top scientific
partners joining forces with our
“Patient groups like the CMTA bring funding,
expertise in disease biology and advice on meaningful
CMT patients, the potential for
breakthrough treatments is real.
intervention approaches and the National Center for The CMTA’s approach is working,
Advancing Translational Sciences brings expertise and together, we will create a
world without CMT. h
in therapeutic development. The result is a more
patient-relevant and efficient route to new
treatments—true translational innovation.”
—CHRISTOPHER P. AUSTIN, MD, DIRECTOR
National Center for Advancing Translational Sciences at the National Institutes of Health
be the
breakthrough
in their lives
Thanks to your support, Charcot-Marie-Tooth Association’s STAR
research program is where it is today – on the verge of delivering
treatments for CMT, the progressive neuromuscular disease that
affects more than 2.8 million people worldwide.
BUT OUR WORK IS FAR FROM DONE.
In the next three years, the CMTA will need $10 million in
funding from people like you to maintain the quickened pace of
its research. With these funds, the CMTA will be able to:
• Conduct clinical trials on drugs already identified to treat CMT,
poising them for Food and Drug Administration approval.
• Continue the search for other treatments for 1A, 1B, 2A, 2E,
1X, 4C, and other types of CMT.
• Continue to pursue every promising avenue toward a cure
until we reach our goal of ending CMT.
More than most people, you know what a drug treatment for CMT
will mean. You undoubtedly have your own living example. Give
today, because there are 2.8 million reasons to end CMT.
Name____________________________________________________
Signature__________________________________________
Address___________________________________________________
City___________________________State___________Zip__________
Phone________________________________
14 THE CMTA REPORT WINTER 2018
E
ven though I don’t have So, how do you know if you
CMT, I faced a problem should have surgery? The key to
similar to many of you— making an informed decision is to
if and when to have foot understand what is happening to
surgery. I waited too long, your foot. Your doctor may be
and I don’t want you to make the able to help, although many are
same mistake. Ever since I can not familiar with CMT. The most
remember, I had pain and stiffness common deformity in about 80
in my left foot and was unable to percent of patients with CMT is a
do certain things that came easily cavovarus foot (pictured at right). grade position, where it is flat on
to my friends. My father, a profes- The arch is high (cavus), the heel the ground. If you are not com-
sor of surgery in New York City, is turned inward (varus), and the fortable in the brace, it is probably
knew the best doctors for me to toes are contracted (clawed). This because these goals are not being
see. I saw countless specialists, but abnormal foot shape results from met. Every week I see patients in
no one could ever come up with a years of imbalanced muscle-pull. this situation who have given up
diagnosis. The peroneus brevis muscle that hope of walking with any nor-
There was nothing wrong and stabilizes the ankle is often the first malcy. Their feet remain twisted
nothing to be done, they said. to weaken, followed by the tibialis inside of braces that are heavy and
I came to accept my problem as anterior muscle that lifts up the cumbersome. They are in pain,
normal, even though my symp- ankle. The small intrinsic muscles which is often attributed entirely
toms worsened over the years. that keep the toes straight also to their neuropathy. But the dif-
Ultimately, after I specialized in become weak. The result is a fuse calluses on the bottom and
orthopaedic foot and ankle surgery, deformity caused by the over-pull sides of the feet, caused by the
I made my own diagnosis. I had a of the muscles that remain strong abnormal stresses from the defor-
tarsal coalition, a condition where (the posterior tibial, peroneus mity, would be enough to cause
some of the bones in the foot are longus and extensor longus). anyone pain. All too often, no one
joined together and do not move In mild cases, there may only has ever told them that surgery is
properly. It was not until 2004, the be some slight imbalance and an option. Look down on your
year that my term as president of fatigue with walking. Often no foot in the brace. If your foot is
the American Orthopaedic Foot treatment is needed, except for a not flat on the ground it is time to
and Ankle Society came to an end, physical therapy program directed consult with an orthopaedic sur-
that I decided to have surgery. By at muscle strength (especially the geon who specializes in the foot
then, however, the damage was peroneus brevis and tibials anterior and ankle.
already done. The foot joints that muscles) and balance. A high-top Surgery is not for everyone,
could have been saved when I was shoe or a simple off-the-shelf brace however. The 20 percent of CMT
17 were unsalvageable. may be sufficient. patients who don’t have a cavo-
As the muscles varus foot deformity will almost
weaken and the defor- always do better with a brace.
mity worsens, a These are usually patients with
bulkier and more complete paralysis below the knee
complex brace is often (except for the Achilles which often
needed. The goal of retains some function). They never
the brace is to stabilize experience the muscle imbalance
the ankle and bring that creates a deformity. These
the foot into a planti- patients all have foot drop, and
WINTER 2018 THE CMTA REPORT 15
CMTA
who has personally raised more than $1 GRAND RAPIDS, MI
million dollars for the CMTA, provided more Angela McElroy and Tracy Thompson from
details on current CMT research, assured Dorr To Eden—Animal Enhanced Naturopathy
everyone that the CMTA’s operating and Holistic Counseling—spoke to the group
NEWS
Funathlon, the third largest CMTA therapy can help with grief, communication,
fundraiser in the country. The Funathlon confidence, trust and boundary issues.
will take place on June 9 in beautiful Angela, who is a naturopathic doctor,
Oxford, Maryland. We are currently looking talked about naturopathy, which can treat
for sponsors and Silent Auction items. If things like nerve pain, anxiety, depression
BALTIMORE, MD/EASTON, MD you would like to help, please contact Clark and chronic issues. Additional resources for
The always amazing Jeana Sweeney spoke Semmes (clarksemmes@gmail.com). information:
at meetings of the Baltimore and Easton At the Easton meeting, Allard representa- • www.dorrtoeden.com/
CMTA Branches on November 19. Jeana tive Laurie Lasky, who has family members • www.facebook.com/Dorr-To-Eden-
quizzed the group about CMT and the with CMT, brought sample Allard braces for 557541261073515/
CMTA and awarded Hershey’s kisses and the group to examine and showed a short • https://eagala.org/
film about athletes with CMT. • www.naturopathic.org/content.asp?con-
t-shirts for correct answers. Jeana also
tentid=60
updated the group on the current scientific Easton branch leader Missy Warfield
Meetings are held every third Wednesday
advancements toward finding a treatment also has passed the leadership baton to
at 6:30 p.m. in the second floor conference
for CMT1A and a host of other CMT Clark Semmes, but her commitment to the
room at Mary Free Bed Rehabilitation Hospital.
h
subtypes. Jeana also told the group about CMTA and our cause is undiminished.
the current CMT campaign called Break- Thanks to Missy and Seth for all they do
GREATER MINNEAPOLIS, MN
throughs. (Donations can be made to fight CMT and support the CMTA! The Greater Minneapolis CMTA Branch
to Breakthroughs using the form Other topics of discussion at the meet- meeting was informative, interactive and
on page 13 or on the CMTA website ings included CMTA Camp Footprint and educational. The 90-minute roundtable dis-
(www.cmtausa.org/cmtbreakthroughs). Maryland’s upcoming medical marijuana cussion was of definite interest for the
CMTA board member Steve O’Donnell program. entire group, as they shared family stories
also attended the Baltimore meeting. Steve, h
(continued on page 20)
WINTER 2018 THE CMTA REPORT 19
T
aylor Lee Hill is 10 years track! Taylor has a need for speed
old and has been diag- and enjoys karting, jet-skiing and
nosed with CMT4C anything with a fast engine. She
through genetic testing. believes her kart engine serves as
Taylor has been receiving her legs, and she is finally on a
physical therapy since she level playing field once she is
was four months old. With her seated in a kart. At the beginning
strong mind and character, noth- of the year, Taylor received a cer-
ing seems to hold her back. She tificate of excellence at her school
has the most beautiful smile and for karting. The principal even
a never-give-up attitude. Neither used Taylor as an example, say-
“can’t” nor “cannot” are in her ing: “No matter what your
vocabulary. In fact, she often says struggles are, Taylor is the perfect
example of what can be over-
come with your mind.” h
those words don’t exist. Struggle
is the preferred word.
With her zest for life, Taylor
manages to do more than any Taylor recently put the CMTA logo on her
child who does not have CMT. go-kart to raise awareness of CMT.
She races go-karts, which takes a
phenomenal amount of energy
and strength. She absolutely loves
the sport. She has been driving for
approximately three years, and she
is improving daily on her speed
and times. Because she has CMT
and wears AFOs, she struggles
with sensation in her feet and lis-
tens to the engine to know where
her throttle is sitting.
Taylor believes the more peo-
ple who know about CMT, the
sooner a cure will be on the hori-
zon. This year, she has decided to
put the CMTA logo on her kart
to create awareness of the disease.
Taylor’s brother, who is the
African Open champion for
2017, also will be putting the
CMTA logo on his kart to show
support for his sister.
Taylor has so much enthusi-
asm and zest for life. She will try
anything! She believes life is for
living, and she makes every sec-
ond count—on and off the race
20 THE CMTA REPORT WINTER 2018
BRANCH NEWS those giving gifts that they instead give a Gary will update to the document for
(continued from page 18) donation to CMT research in a loved one’s Elizabeth, who will see that all the data is
name. It’s easy, tax-deductible, and so much incorporated into the CMTA’s Pinterest site.
of living with CMT, concerns of younger better than getting another unwanted tie or Going forward, please send all suggestions
family members being affected by CMT, knick-knack. for “CMT-useful” items to Gary, who will
experiences visiting neurologists who gave Two members noted that Dr. Gandhi, a forward them to Elizabeth for inclusion in
limited information and/or negative infor- neurologist at DaVita Medical Group in the Pinterest site.
mation, as well as of experiences at the Albuquerque is particularly knowledgeable The next meeting of the New Mexico
CMTA Center of Excellence at the University in CMT. CMTA Branch will be at noon on May 5 at
of Minnesota where many branch members CMT Advisory Board member and podia- the Momentum Pilates Studio in Albu-
have been evaluated by Dr. David Walk. trist Greg Stilwell, DPM, then gave an querque, where a special presentation will
Guest presenter Dr. Phillip Haber shared excellent presentation on many types of be given on Pilates for those with CMT.
his experiences of living with CMT and gave h
orthotic alternatives. He brought a number
tips on how to ask for assistance from oth- of samples that generated a useful discus- RESEARCH TRIANGLE, NC
ers when needed. Dr. Haber, who enjoys sion about orthotics, bracing and related The Research Triangle Area, NC CMTA
fishing and camping in the wilderness, topics. He noted that many of these types of Branch met for the first time at the Carolina
spoke about his international travels and orthotics are available from Mile High Meadows Retirement Community location
how people of different cultures extended on November 11. Approximately 15 people
Orthotics (http://www.mholabs.com). Also
him a helping hand. He also shared stories attended to hear Jane E. Andersen, DPM,
available online is a gel pad that adheres to
about local fitness centers and the impor- talk about balance, braces and appropriate
foot and ankle called Dr. Jill’s Footpad. The
shoes for people with CMT. Attendees com-
tance of having an exercise program group also noted that New Balance is dis-
pleted a brief written survey to gauge
designed for his CMT needs. Dr. Haber’s talk continuing extra-depth shoes. Apex and
interest in topics for future meetings.
encouraged attendees to overcome their Brooks were mentioned as alternatives. Two
In addition, Margaret Lee, who led the
fear of asking for assistance when needed, members recommended Hanger (specifically
branch for the past five years, was honored
even if they are simply asking for help but- the Martin Luther King location) as another and given gifts of appreciation by members.
toning the top button of a dress shirt. possibility for bracing or special shoes.
h
The new branch co-leaders are Jeanne
The New Mexico CMTA Branch met Boehlecke and Rick Nelson.
NEW MEXICO again on February 3 at its new location, the h
The New Mexico CMTA Branch met on Manzano Multicultural Center, with 10 PORTLAND, OR
November 18 and welcomed two new mem- members present. The group spent a lot of The Portland, OR CMTA Branch extended a
bers, for a total of 18. Branch leader Gary time reviewing the document CMT Chal- very warm welcome to newcomers Karen and
Shepard started off the meeting with an lenges and Solutions, which was prepared David from Hood River, as well as Natalie and
update on substantial CMTA research by the branch some time ago. CMTA Board Jeff. The two January meetings were produc-
progress. He then talked about holiday gift member Elizabeth Ouellette suggested that tive and well-attended. The group met on
giving and mentioned that people often get the material in this document be incorpo- Thursday evening at La Hacienda Real in
a lot of holiday gifts they really don’t need rated into the CMTA-managed Pinterest site Beaverton and discussed clinical trials, as well
or want. He recommended suggesting to (www.pinterest.com/cmtassociation). (continued on page 22)
CMTA
Branches
Most CMTA Branches can be accessed
online at www.cmtausa.org/branches
BRANCH NEWS The 12 attendees listened to Elizabeth’s CMTA is just a footnote in a dusty medical
(continued from page 20) personal journey of living with chronic neu- journal.
ropathic pain and also what she has learned Twenty-four people left the gathering
as resources for children and teens with CMT. by helping her son and many others in the armed with hope and information about the
Please pass along any good suggestions for CMT community manage chronic issues breakthrough research that is happening
parents of kids with CMT to branch leader related to CMT. She gave an overview of right now. Studies in CMT1A have not only
Debbie McHugh at mchugh6847@gmail.com. current medical, interventional, behavioral, stopped progression of the disease, but
The afternoon meeting on Friday pro- pharmacologic and rehabilitation therapies they have also showed improvement in
duced a very exciting prospect to raise that may be helpful in navigating the maze some symptoms!
funds and put CMT on the radar! Fay sug- of chronic pain and treatment options. Eliz- h
gested asking members to submit photos abeth also shared the latest CMT research TORONTO
of people with CMT living their lives for a news and answered questions. At the Toronto CMTA Branch meeting on
2019 calendar. Nan has already submitted h November 14, the group welcomed three
photos of herself whitewater rowing and SOUTHWEST WISCONSIN speakers from the Apollo Cannabis Clinic,
horseback riding. People submitting photos Jonah Berger, CMTA Advisory Board mem- Dr. Tanny Raz, Shinelle Villafana, and owner
do not have to be athletes to make this a ber, CMTA Camp Footprint co-director and Bryan Hendin, who explained that he
successful project. Any enjoyable activities, motivational speaker was our special guest opened Apollo because he is passionate
from reading to cooking to teaching or dri- on November 11. Jonah is the author of He about helping people who are in pain. They
ving a hand-operated car will serve to put Walks Like a Cowboy, a book detailing the explained the difference between the com-
faces on people with CMT and create more life and lessons of his personal CMT jour- ponents of medical marijuana—cannabidiol
awareness. The plan is to produce and sell ney. It was a treat to hear him speak openly (CBD) and THC—how those components
these calendars. and honestly about the day-to-day strug- affect the body and the various types of
h gles of living with CMT. His focus was on cannabis available for medical use.
DALLAS, TX how he does everything he can to rise Steven Baker, MD, an associate profes-
At the January 13 meeting, Michelle Hayes above his CMT challenges to live a positive sor in the division of Physical Medicine and
and Gwen Redick introduced guest speakers and fulfilling life. Jonah helped everyone Rehabilitation, Department of Medicine and
Sarah and Suzan Skelton and Melanie Farrar, see the positives of each day, and he a research director at McMaster Health Sci-
physical therapists from Children’s Grapevine. encouraged the group with an awesome ences Centre in Hamilton, will speak at the
They distributed a handout with tips for daily message of hope for the future. April 28 meeting at 10 a.m.
stretching with neuromuscular disorders. Jonah’s visit was a thank you gift to the Other 2018 meetings will at 1 p.m. on
They also gave tips on what to avoid, balance Southeast Wisconsin CMTA Branch from the March 24, September 8 and November 3.
concerns, proper foot attire and orthotics. CMTA for its successes in raising funds and The group discussed a fundraiser for
h awareness over the past three years. 2018. Since the group is small and some
SOUTHERN CONNECTICUT Donations from the branch, combined members are not very mobile, they decided
On November 13, members of the Southern with contributions from others in the CMTA to hold another raffle. Please send Linda
Connecticut CMTA Branch welcomed Eliza- community, have helped fund every step of any suggestions for raffle items other than
beth Ouellette via Skype from California, the drug discovery program. The CMTA can cash. Raffle tickets will be distributed at the
and she gave her presentation “Chronic count on Southwest Wisconsin to continue September meeting, and prize winners will
Pain: A Patient Perspective.” to fundraise and spread awareness until be announced at the November meeting.
INTERNATIONAL
The Children’s Hospital (Westmead, Australia) ............................Dr. Manoj Menezes
The National Hospital for Neurology
& Neurosurgery (London, England) ..............................................Dr. Mary Reilly
C. Besta Neurological Institute (Milan, Italy) .................................Dr. Davide Pareyson
University of Antwerp (Edegem, Belgium) ....................................Dr. Jonathan Baets
CMTA MEMBERSHIP, PUBLICATIONS & ACCESSORIES ORDER FORM
NAME: ______________________/_______/________________________________________________________
First MI Last
SCOOTERING
(continued from page 17)
ADDRESS:_____________________________________________________________________________________
scootering. I have an adult Razor
CITY: ___________________________________________ STATE: _______ ZIP: ___________________________
scooter I use to get around the
neighborhood. The great thing COUNTRY/POSTAL CODE (IF NOT U.S.): ___________________________________________________________
about scootering for someone liv-
ing with CMT is that you are DAYTIME PHONE:________________________________ EVENING PHONE: ____________________________
standing squarely on your foot, as
EMAIL: _______________________________________________________________________________________
you would with other activities,
such as balancing poses in yoga. ***If you are a STAR member or are joining as a STAR member now, you may purchase publications
But the key difference is the move- and accessories at discounted prices. (Some exclusions may apply.) To check your membership
status, please call 1-800-606-2682, ext.105.***
ment, which enables you to keep
your balance for an extended Subscription Membership Benefits: STAR Membership Benefits:
period without falling over. More • Online access to valuable information • All of the benefits of Subscription Membership
importantly, though, the move- about living with CMT
PLUS
ment enables you to maintain this • An information kit and a 10% discount • One free pair of Aetrex Shoes in the style of their choice
at the CMTA store (new STAR members only)
position without steadying yourself
• Quarterly delivery of The CMTA Report, • 50% off all Aetrex shoes (new and renewing STAR members)
against a solid object. This way, (electronic and/or hard copy) • An expanded and updated copy of the CMT Survivor’s Guide
you are pressing even more firmly • A 20% discount at the CMTA Store
than you would if you were doing • One You’re a STAR auto decal
exercises against a wall or using
crutches or a knee scooter when J O I N T H E C M T A :
you are non-weight bearing.
n $30
Choose your magazine format
So, the first order of business Subscription Membership (check one or both)
for me once I am recovered will be STAR Membership n $100 n PDF n Print
to break out the scooter and head
QUANTITY COST TOTAL
off into the distance. I realize, of
Regular Price STAR Member Price
course, this may be like flashing the
NOW ON KINDLE! “101 Practical Tips Kindle version available for $7.95 on Amazon.com:
home run sign for many of you. for Dealing with Charcot-Marie Tooth Disease” www.amazon.com/ebook/dp/B06ZZ4QGN1
My symptoms are very mild. That,
My Child Has CMT $5 $5
along with two surgeries correcting
CMTA T-Shirts n Navy Blue with white logo) n White with blue logo)
the alignment of my feet, makes it Quantity and Size: S___ M___ L___ XL___ 2XL___ 3XL___
$15 $12
possible for me to scooter effec-
CMTA Shark-0 T-Shirts $20
tively. Clearly, it may not be right Quantity and Size: S___ M___ L___ XL___ 2XL___ 3XL___
for you, or perhaps you can only
CMTA Sweatpants
do it on a more limited basis. I Quantity and Size: Youth XL___ $20
switch feet every block and a half Adult S___ M___ L___ XL___ 2XL___ 3XL___
or so, for example. Perhaps you Be a STAR Wristbands $1.50 each*
would need to switch more often Be a STAR Necklaces (Includes battery) $5 each*
or take frequent breaks. Washable CMTA Tattoo (Pack of 5) $1 per pack
It’s important to check with
CMTA Pin $3 each
your doctor before starting any
CMTA Brochure & Neurotoxic Drug Card FREE
new fitness routine, including
scootering. You’ll also need to con- Donation to the CMTA (100% Tax-deductible)
sider protective equipment, such as Shipping & Handling (Orders under $10, add $3.50; orders $10 and over, add $7.50)
a helmet or knee pads. If it is possi- *Quantity discounts for these items available online ORDER TOTAL
ble to scooter effectively, however,
please give it a try. It might be just n Check payable to the CMTA (US residents only; non-US residents, please use credit card or international money order.)
the thing to build some much- n Money Order n American Express n MasterCard n VISA
needed strength in your calves
while you reinforce the proper Card Number: _____________________________________________ Expiration Date: _______________________
alignment of your feet. The best Mail to: CMTA, P.O. Box 105, Glenolden, PA 19036; or fax to 610-499-9267
thing is that you might have some A copy of the official registration and financial information may be obtained from the Pennsylvania Department of State by calling,
fun doing it. I certainly do! h
!
?
Uncertain or minor risk:
5-Fluouracil
peripheral neuropathy, affecting CMT causes foot-drop walking gait, foot
s
Adriamycin
Almitrine (not in US)
approximately 150,000 Americans. bone abnormalities, high arches and
Chloroquine
CMT may become worse if certain hammer toes, problems with balance,
s
Lansoprazole (Prevacid)
Mefloquine severe disability. CMT, physical therapy, occupational
Omeprazole (Prilosec)
Penicillamine
CMT is also known as peroneal therapy, and moderate physical activity
s
Phenytoin (Dilantin)
Podophyllin resin are beneficial.
Sertraline (Zoloft) muscular atrophy and hereditary
Statins
motor sensory neuropathy. CMT is usually inherited in an autosomal
s
Enalapril
Glutethimide
Lithium peroneal muscles (located on the CHN, and DSN.
Phenelzine
front of the leg below the knee).
Propafenone CMT is the focus of significant research,
s
Sulfonamides
Sulfasalazine CMT does not affect life expectancy. bringing us closer to a world without CMT.
s