Resources

Clinician resources for children with centronuclear myopathies

Doctors to care for your child

 

Susan T. Iannaccone, MD, FAAN

Director of Pediatric Neurology Children's Medical Center Ambulatory Care Pavilion in Dallas
2350 Stemmons Freeway, Ste 5074
Dallas, TX 75207
214-456-5220

 

Jim Dowling, MD. PhD. 

Jim Dowling, MD, PhD
Division of Neurology
Genetics and Genome Biology Program
Hospital for Sick Children
Departments of Paediatrics and Molecular Genetics
University of Toronto
555 University Ave 
6th Floor Neurology Toronto, ON M5G 1X8
416-813-7654 ext. 309090 

Carsten Bonnemann, MD 

Chief, Neuromuscular and Neurogenetic Disorders of Childhood Section
National Institute of Health
10 Center Dr.
CRC, Room 12N210, MSC 1477
Bethesda, MD 20892
301-496-0272

 

Peter Kang, MD 

Chief, Division of Pediatric Neurology
Associate Professor of Pediatrics Division of Pediatric Neurology
University of Florida College of Medicine 
PO Box 100296
Gainesville, FL 32610
352-273-8920

Professor Martin K. Childers, D.O., PhD

Department of Rehabilitation Medicine
University of Washington
HMC Box 359655
325 9th Ave
Seattle, WA 98104

 

Baryy J. Byrne, MD, PhD

Byrne Lab for Pediatric Neuromuscular Research
University of Florida
P.O. Box 100296
Gainesville, FL 32610
352-273-6563

 

Geneticists who can help with diagnosing your child

 

Casie Genetti

Genetic Counselor Beggs Lab
Boston Children's Hospital 3 Blackfan Circle, CLSB 15031 
Boston, MA
617-919-2169
cgenetti@enders.tch.harvard.edu.

 

Kim Amburgey

Geneticist and Clinical Director
The Hospital for Sick Kids
555 University Ave 
6th Floor Neurology Toronto, ON M5G 1X8
 416-813-7654 ext. 301707 

 

Elizabeth DeChene, MS CGC

Children's Hospital of Philadelphia
Division of Human Genetics
3615 Civic Center Blvd
Abramson Research Center, 1012
Philadelphia, PA 19104
267-426-8379

 

Pulmonoligists who understand the complexities of neuromuscular diseases

Oscar (Hank) Mayer, CHOP
Howard Panitch, CHOP
Robert Graham, Boston Children’s Hospital 
Jonathan Finder, Children’s Hospital of Pittsburgh
Daniel Sheehan, Buffalo Children's
Richard Kravitz, Duke
Richard Shell, Columbus (Nationwide Children’s)
Hemant Sawnani, Cincinnati Children’s 
Mary Schroth, University of Wisconsin
Oren Kupfer, Denver Children’s
Harold Farber, Texas Children’s (Houston)
Amanda Sheehan, Seattle Children’s
 
Anita Simonds, Royal Brompton Hospital (London)
Brigitte Fauroux, Hôpital Necker Enfants Malades (Paris)
Renato Cutrera, Bambino Gesu Ospedale Pediatrico (Rome)
Uwe Mellies, University of Duisburg-Essen (Essen, Germany)
Dominic Fitzgerald, University of Sydney