Here is all the information about the CMTA\'s Centers of Excellence around the country. Please look for the closest center near you, where you will find a variety of CMT specialists!

1. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Name
Johns Hopkins CMT Clinic
Adult or Pediatric?
Both adult and pediatric
Street Address Office:
Johns Hopkins School of Medicine
John G. Rangos Sr. Building, Neurology 248
855 N. Wolfe Street
Baltimore, MD 21205
Clinic:
Johns Hopkins Outpatient Center
601 North Caroline Street
Baltimore, MD 21287-0006
Phone Number 410-955-2227
Web Address http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/cmt/
CMT Clinic Hours of Mondays 8-12, but CMT patients can also be seen in other times in regular
Operation Peripheral Nerve Clinics
Paying or Non-Paying Paying
Clinic?
Recommended Length of 2 hours
Visit?
IRB Approval Status IRB approved
Neurologist Name(s) Ahmet Hoke MD, PhD (Director)
David Cornblath MD
Thomas Crawford MD (Pediatric neurologist)
Thomas Lloyd MD, PhD
Charlotte Sumner MD
Pediatrician Name(s)
Physical Therapist Dave Marriott (Physical Therapist)
Name(s) Susan Schiaffino (Occupational Therapist)
Physiatrist Name(s)
Orthotist Name(s) Hal Thompson
Genetic Counselor Lori Erby
Name(s)
CMT Clinic Coordinator Denise Tawney

2. MDA Health Coordinator Kathleen Kennedy (MDA Clinic Coordinator)
Name MDA Rep: Laurel Gaffney (Adult) and Rachel Lewkowicz (Pediatric)
MDA Phone Number
Brief Description of Clinical Services Offered:
The JHU CMT Clinic provides comprehensive clinical care and disease education from initial diagnosis to
advanced disease. Our team provides sensitive and caring support for patients and their families. The
therapeutic goal is to maximize a patient’s health, functioning, and ability using available therapy,
equipment, exercise, and nutrition. Clinical research participation is offered to all appropriate and
eligible CMT clinic patients.
Services include: Expert evaluation by a neuromuscular specialist with emphasis on peripheral
neuropathies including CMT
On site: physical therapist, occupational therapist, orthotist, genetics counselor, EMG and nerve
conduction studies
Brief Background of the Clinic and Clinical Director:
The Neuromuscular Division at Johns Hopkins has been a regional and national referral center for patients with
peripheral neuropathies for many years. Although in the past CMT patients were seen in the Peripheral Nerve
Clinics, JHU CMT Center was established in May 2009 to provide a multi-disciplinary coordinated care for patients
with CMT. The CMT clinic is staffed by 4 adult and 1 pediatric neuromuscular specialists.

3. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Name
Wayne State University
Adult or Pediatric?
Adult and Pediatric
Street Address
University Health Center, 4201 St Antoine, 8B, Detroit MI 48201
Phone Number
313-577-1689 (Lisa Rowe)
Web Address
http://neurology.med.wayne.edu/neurogenetics/about_clinic.php
CMT Clinic Hours of Operation
Thursdays all day
Paying or Non-Paying Clinic?
All patients with CMT
Recommended Length of Visit? Full day
IRB Approval Status
Approved
Neurologist Name(s) Michael Shy, Gyula Acsadi, Sindhu Ramchandren, Agnes Acsadi, Richard
Lewis
Pediatrician Name(s)
Rosemary Shy, Gyula Acsadi (Pediatric neurology)
Physical Therapist Name(s)
Polly Swingle
Physiatrist Name(s)
Steven Hinderer
Orthopedic Surgeon (s) Robert Meehan
Orthotist Name(s) Present on site
Genetic Counselor Name(s) Carly Siskind, Shawna Feely, Lindsey Miller
MDA Health Coordinator Name
Julie Campbell
MDA Phone Number
734-416-7076

4. Brief Description of Clinical Services Offered:
This is a multidisciplinary clinic devoted exclusively to care for patients with inherited neuropathies and
to perform clinical research that promotes the understanding and treatment for these disorders.
Patients spend a full day receiving clinical evaluations, genetic counseling, PT/OT advise,
orthotic/bracing advice and in certain cases evaluation by orthopedic surgery.
Brief Background of the Clinic and Clinical Director:
The clinic has been in existence since 1996 and currently cares for over 1000 patients with various forms
of CMT. Multiple clinical research advances have occurred as a result of the clinic including the CMT
Neuropathy Score (CMTNS), a measure of impairment that is used internationally to measure clinical
impairment in CMT. The clinic is supported in part by research grants from the NIH, MDA and CMTA. Dr.
Michael Shy is Director of the Clinic. Dr. Shy Chairs the Medical Advisory Board of the CMTA, is a
member of the Medical Advisory Committee (MAC) of the MDA, is Primary Investigator (PI) of the North
American CMT Network and is PI of the NIH supported Rare Disease Clinical Research Center (RDCRC)
for Inherited Neuropathies.

5. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Name
University of Rochester Medical Center
Adult or Pediatric? Adults and children 3 years and older
Street Address
601 Elmwood Avenue, Rochester, NY, 14642
Phone Number 585 275 2559
Web Address http://www.urmc.rochester.edu/neurology/patient-
care/neuromuscularctr.cfm
CMT Clinic Hours of Operation
Thursday 8am -12 pm; Patients participating in research studies may be
seen at other times
Paying or Non-Paying Clinic? Accept all forms of insurance
Recommended Length of Visit? New patient visit: 1.5-2.5 hours; Follow-up visit 30-60 minutes
IRB Approval Status The CMT clinic has IRB approval for the CMT Association/MDA North
American CMT Database and the NIH sponsored Inherited Neuropathy
Consortium Rare Disease Clinical Research Center Studies.
University of Rochester is also the Coordinating Center and a site for the
MDA/CMT Association sponsored Ascorbic Acid Trial in CMT1A. Dr.
Herrmann has IRB approval for an Ancillary study of in vivo Confocal
Microscopy of Meissner Corpuscles in the skin as a measure of CMT
neuropathy
Neurologist Name(s) David N. Herrmann, MD; Eric L. Logigian, MD; Michael Stanton, MD
Pediatrician Name(s) Dr. Herrmann does evaluations of children with CMT over age 3 years. For
younger children, referrals are made to Pediatric Neurology
Physical Therapist Name(s) Katy Eichinger
Physiatrist Name(s) Referrals can be made to Dr. Poduri, Chair of Physical Medicine and
Rehabilitation Department, University of Rochester
Orthotist Name(s) Utilize a variety of local orthotists depending on patient’s needs
Genetic Counselor Name(s) Referrals are made to Erin Lagoe, M.S.
MDA Health Coordinator Name

6. Brief Description of Clinical Services Offered:
The CMT clinic at University of Rochester Medical Center operates within the Neuromuscular Disease
Center at the University of Rochester. Individuals with CMT or suspected CMT are seen in new patient
evaluations by Dr. Eric Logigian on Monday am, or Dr. Herrmann and Stanton on Thursday am. Katy
Eichinger, a physical therapist with a clinical and research interest in CMT, does balance, gait, orthotic
and other functional evaluations in the clinic on Thursday mornings, and makes recommendations to the
Physicians in the CMT clinic and patients regarding appropriate physical therapy, rehabilitation and
orthotic interventions. Patients with established CMT are seen in clinical follow-up on Thursday
mornings. Dr. Herrmann, Stanton and Logigian are assisted by 2 nurse practitioners, Debra Guntrum
and Cindy Gibson who have experience in the care of patients with neuromuscular disorders. The CMT
clinic has access to ancillary services including the University of Rochester EMG laboratory directed by
Dr Eric Logigian, and nerve and skin biopsy diagnostic services (Dr. Herrmann). The University of
Rochester has Occupational Therapy and Orthotics Departments, and has pediatric and adult orthopedic
surgeons who specialize in foot and ankle disorders, as well as ENT and pulmonary specialists
experienced in the respiratory and vocal cord effects of CMT. Orthopedic and neurosurgeons with
expertise in spine and nerve root disorders are available.
Brief Background of the Clinic and Clinical Director:
Dr. David Herrmann is an Associate Professor of Neurology and Pathology at the University of Rochester
Medical Center. He is Director of the Peripheral neuropathy and CMT clinics and Director of the Skin
biopsy Laboratory at the University for the study of sensory neuropathies. Dr. Herrmann obtained his
medical degree at the University of the Wiwatersrand, Johannesburg, South Africa. He completed an
Internal Medicine Residency in Cleveland Ohio, and did his Neurology Residency training at the
University of Michigan, in Ann Arbor. He undertook a peripheral neuropathy research fellowship at
Johns Hopkins University and specialized in neuromuscular disorders and electromyography at the
University of Michigan. Dr. Herrmann has been a faculty member at the University of Rochester for 11
years, and established the Peripheral Neuropathy and CMT clinics at the University. His main clinical
interest is in the care of patients with peripheral neuropathies, with an emphasis on CMT and diabetic
neuropathies. His research interest focuses on improving methods for assessment and monitoring of
peripheral neuropathies including CMT, and in development of therapy for CMT.

7. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Name University of Pennsylvania
Adult or Pediatric? Adult
Street Address Second Floor, Ravdin Building
University of Pennsylvania Medical Center
Philadelphia, PA 19014
Phone Number 215-662-3606 (appointments)
Web Address http://www.pennmedicine.org/neuro/services/neuromusc.html
CMT Clinic Hours of Operation Fridays 1-5; appointments can be made at other times by special
arrangement
Paying or Non-Paying Clinic? Paying
Recommended Length of Visit? 2 hours
IRB Approval Status IRB approved
Neurologist Name Steven Scherer, M.D., Ph.D.
Neurologist who evaluate Shawn J. Bird, M.D.
patients and perform clinical Mark J. Brown, M.D.
neurophysiology (EMG) Richard Finkel, M.D.
Toby Ferguson, M.D., Ph.D.
Steven Scherer, M.D., Ph.D.
Pediatrician Name(s)
Physical Therapist Name(s)
Physiatrist Name(s)
Orthotist Name(s)
Scott McCulloch
Genetic Counselor Name(s)
Dana Clay
Othopedist Name(s) Helen Horstmann, M.D.
MDA Health Coordinator Name
Megan Craig

8. Brief Description of Clinical Services Offered:
Dr. Steven Scherer provides a complete diagnostic evaluation, patient education, and helps arrange for
the appropriate ancillary services, including electrophysiology (EMG), genetic testing, physical therapy,
occupational therapy, orthopedics, and genetics counseling.
Brief Background of the Clinic and Clinical Director:
The Department of Neurology at the University of Pennsylvania has maintained expertise in peripheral
neuropathy, including CMT, since the 1970s. Some of the genetic causes of CMT were discovered at the
University of Pennsylvania. The MDA has long supported the neuromuscular clinic, and along with the
CMTA, now supports the CMT Clinical Centers of Excellence. In addition to the clinical services noted
above, appropriate patients will be given the opportunity to participate in research.
Dr. Steven Scherer is a specialist in peripheral neuropathy, and has particular expertise in CMT. He has
personally seen more than 200 patients who have various forms of CMT, and is involved in ongoing
research project to find the causes and the treatments for these diseases.

9. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Name The Children's Hospital of Philadelphia Neuromuscular Clinic
University of Pennsylvania School of Medicine
Philadelphia, PA
Adult or Pediatric? Pediatric
Street Address 34th Street and Civic Center Blvd
Philadelphia, PA 19104
Phone Number 215-590-1719 (Neurology)
267-426-2320 (Neuromuscular clinic appointments)
Web Address www.chop.edu
CMT Clinic Hours of Operation Wednesdays, Thursdays and Fridays
EMGs on Tuesdays
Paying or Non-Paying Clinic? All patients are seen for an initial consultation without regard to
insurance coverage. The MDA provides some support to our clinic to cover
unreimbursed patient care costs. Our social worker assists those without
insurance to explore other coverage options
Recommended Length of Visit? 2 hours: neurology, OT, PT, genetics, social worker
IRB Approval Status Pending; anticipated approval 2/2010
Neurologist Name(s) Richard S. Finkel, Sabrina Yum, Carsten G. Bonnemann, Gihan Tennekoon
Pediatrician Name(s)
Physical Therapist Name(s) PT: Allan Glanzman, Jean Flickinger, Megan Schaefer
OT: Tim Estilow, Michelle Hsia
Physiatrist Name(s) Chong-Tae Kim, Heakyung Kim, Thomas Drake
Orthotist Name(s) Nopco brace shop at CHOP, Lewall’s
Genetic Counselor Name(s) Livija Medne
MDA Health Coordinator Name Page E. McKonly. Healthcare Services Coordinator
Delaware Valley MDA
600 Reed Road, Suite 104
Broomall, PA 19008
MDA Phone Number Phone: 610-325-5758
Fax: 610-325-0506
pmckonly@mdausa.org
3341.office@mdausa.org

10. Brief Description of Clinical Services Offered:
The Neuromuscular Clinic at The Children's Hospital of Philadelphia provides comprehensive diagnostic
testing, genetic counseling, multidisciplinary management and participation in clinical trials. An
emphasis is placed on maximizing each child’s function, promoting independence and inclusion in age-
related activities. Depending upon the child’s needs, occupational and physical therapist, nutrition
consultation and social work assessment are provided at each clinic visit.
Brief Background of the Clinic and Clinical Director:
The Children's Hospital of Philadelphia is the oldest pediatric facility in the US. The Neuromuscular Program at
CHOP works in conjunction with the adult counterpart at The Hospital of the University of Pennsylvania.
Neuropathology, fellowship training and clinical conferences are coordinated between the two sites. Each has a
clinical and a research component. The pediatric clinic at CHOP provides clinical care to the Philadelphia region,
nationally and internationally. A multidisciplinary clinic format is utilized, where several providers evaluate the
child at each visit.
Richard S. Finkel, MD has been the director of the clinic since 1999. He is a pediatric neurologist with a focus on the
diagnosis and treatment of children with neuromuscular disorders. He participates in several clinical trials and
collaborates in numerous clinical trial groups in the US and Europe.

11. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Children's Medical Center Dallas, Division of Pediatric Neurology
Name
Adult or Pediatric?
Pediatric
Street Address
2350 Stemmons Fwy, Suite 5074, Dallas, TX 75207
Phone Number
214-456-5220
Web Address
http://www.childrens.com/Specialties/template.cfm?groupid=126&pageid=647
CMT Clinic Hours of M-Th 7:30 – 5:00
Operation
Paying or Non- Both
Paying Clinic?
Recommended 2 hours
Length of Visit?
IRB Approval Status Approved
Neurologist Name(s) Susan T. Iannaccone, MD, FAAN
Cristian Ionita, MD (neuromuscular fellow)
Pediatrician Name(s) None
Physical Therapist Leslie Nelson, MPT
Name(s)
Physiatrist Name(s) Frank McDonald, MD
Orthotist Name(s) Greg Small and Franck Vautrin
Genetic Counselor Gail Brookshire
Name(s)
MDA Health Joe Sanchez
Coordinator Name
MDA Phone Number 972-480-0016

12. Brief Description of Clinical Services Offered:
Full evaluation and treatment of CMT children by Dr. Iannaccone, a neuromuscular fellow or physician’s
assistant. Treatment plan is enhanced by a care coordinator, clinic nurse, dietitian, physical therapist,
MDA representative and two research coordinators.
Brief Background of the Clinic and Clinical Director:
Neuromuscular Clinic: The inception of Dr. Iannaccone’s Dallas-based neuromuscular clinic took place
at Texas Scottish Rite Hospital for Children in Dallas, TX, where she was the
Director of Neuromuscular Disease and Neurorehabilitation from 1990 - 2005. In
2005, Dr. Iannaccone became the Jimmy Elizabeth Westcott Distinguished Chair
of Pediatric Neurology at UT Southwestern Medical Center and moved her clinic
to Children's Medical Center Dallas. Currently, Dr. Iannaccone’s database
includes approximately 350 CMT children. She designates one clinic day per
month to her CMT clinic at Scottish Rite and sees several new CMT patients per
month at Children's Medical Center Dallas. Dr. Iannaccone’s neuromuscular
team is comprised of a neuromuscular fellow, physician’s assistant, care
coordinator, clinic nurse, dietitian, physical therapist, MDA representative and
two research coordinators.
Susan T Iannaccone, MD, FAAN:
State University of New York, Syracuse, New York MD 1969 MEDICINE
LeMoyne College, Syracuse, New York BS 1962-65 BIOLOGY
Strong Memorial Hospital, University of Rochester, 1972-75 Neurology
Rochester, New York
St. Louis Children's Hospital, Washington University, 1971-1972 Pediatrics
St. Louis, Missouri
State University Hospital, Upstate Medical Center, 1969-1971 Pediatrics
Syracuse, New York
2005-Present Jimmy Elizabeth Westcott Distinguished Chair of Pediatric Neurology
2004-Present Professor of Pediatrics, University of Texas Southwestern Medical Center at
Dallas, Dallas, Texas

13. 1995–Present Professor of Neurology, University of Texas Southwestern Medical Center at
Dallas, Dallas, Texas
2008 Texas 2008 Super Doctors (Texas Monthly)
1999 Program Director, Annual Meeting of the Charcot-Marie-Tooth Association,
Dallas, Texas
ARTICLES, PUBLICATIONS, AND PRESENTATIONS OF CMT:
Sparagana S, Iannaccone ST, Delgado M, Brumback RA: Charcot-Marie-Tooth disease versus muscular
dystrophy. J Child Neurol 9(2):202, 1994.
Chudnow R, Iannaccone ST, Barohn RJ: Chronic inflammatory demyelinating polyneuropathy versus
Charcot-Marie-Tooth disease. J Child Neurol 10(2):160, 1995.
Iannaccone ST, Rosenberg R, Greenlee RG, Carman D, Birch J, Nance J: What is Charcot-Marie-Tooth
Disease? Presented at the Charcot-Marie-Tooth Association Patient/Family Conference, Texas
Scottish Rite Hospital for Children, Dallas, Texas, October, 1991.
Iannaccone ST: History of Charcot-Marie-Tooth disease and clinics. Presented at the Annual Meeting of
the Charcot-Marie-Tooth Association, Dallas, May 15, 1999.
Beeravolu L and Iannaccone ST: CMT2A2 in children. J Clin Neuromusc Dis 9 (March): 10-11, 2008.
Beeravolu LR and Iannaccone ST, Sparagana SP: Charcot-Marie-Tooth Neuropathy (UCMT) Type 2A2 in
Children: A Retrospective Case Series. Neurology 72:A295, 2009.
Ionita C and Iannaccone ST: “A rare cause of floppy infant syndrome,” Carrell-Krusen Symposium, Dallas,
TX; February 25, 2010.
Almidani and Iannaccone ST: “Six year old boy with neuropathy,” Carrell-Krusen Symposium, Dallas, TX;
February 25, 2010.

14. Charcot Marie Tooth Association
Clinical Center of Excellence Fact Sheet
Clinic/Institution Name University of Washington
Adult or Pediatric? Adult
Street Address 1959 Pacific St; Seattle WA; 98195
Phone Number 206-598-4030
Web Address http://depts.washington.edu/neurogen/
CMT Clinic Hours of Operation Tuesdays and first Wednesday afternoon each month
Paying or Non-Paying Clinic? Paying
Recommended Length of Visit? 2 hours
IRB Approval Status Approved
Neurologist Name(s) Thomas D. Bird
Pediatrician Name(s) None
Physical Therapist Name(s) Several
Physiatrist Name(s) Gregory Carter
Orthotist Name(s) NA
Genetic Counselor Name(s) Corrie Smith
MDA Health Coordinator Name Sara Kleiver
MDA Phone Number 206-283-2106
Brief Description of Clinical Services Offered:
Diagnosis, genetics testing, genetic counseling, physical therapy, orthotics
Brief Background of the Clinic and Clinical Director:
Dr. Bird has been involved with CMT diagnosis and research for more than 30 years. Our CMT clinic is embedded
within our MDA and Neurogenetics clinics at the University of Washington.