Spinal Muscular Atrophy Doctors and Professionals

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Spinal Muscular Atrophy is too often unheard of among doctors. FightSMA is building a list of medical professionals familiar with SMA. With this list, we hope to provide assistance for families facing this disease. (Help us build this list.)

List organized by state >>>

NeurologyOrthopedics, Physical Medicine, and Physical TherapyPulmonology and RespiratoryNutrition and MetabolismSpeech and Language TherapyPrimary Care PhysiciansGenetics

Neurology

Gyula Acsadi, MD, PhD
Clinical Division Chief of Division of Neurology, Department of Pediatrics
Wayne State University
Neurology Clinic
University Health Center – 8A
4201 St. Antoine Street
Detroit, Michigan 48201
Phone: (313) 745-5788
Send an email
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Anne M. Connolly, MD
Department of Neurology
Washington University School of Medicine
660 S. Euclid
Campus Box 8111
St. Louis, Missouri 63110
Phone: (314) 362-6981
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Thomas Crawford, MD
Division of Neurology
Johns Hopkins Hospital
The David M. Rubenstein Child Health Building, Suite 2158
200 N. Wolfe Street
Baltimore, Maryland 21287
Phone: 410-955-4259
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Basil T. Darras, MD
Neuromuscular Program Director
Children’s Hospital Boston
300 Longwood Avenue
Boston, Massachusetts 02115
Phone: 617-355-8235
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Darryl C. De Vivo, MD
Director, The Colleen Giblin Research Laboratories for Pediatric Neurology
Columbia University Medical Center
Neurological Institute of New York
710 West 168th Street
New York, New York 10032
Phone: 212-305-5244
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Raymond J. Fernandez, MD
Pediatrics and Neurology
All Children’s Hospital
2508 W Virginia, Suite B
Tampa, Florida 33607
Phone: 813-878-2191
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Richard S. Finkel, MD
Neuromuscular Program Director
The Children’s Hospital of Philadelphia
Specialty Care Center
East Building
210 Mall Boulevard
King of Prussia, Pennsylvania 19406
Phone: 610-337-3232
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Edward M. Goldstein, MD
Child Neurology Associates, P.C.
5505 Peachtree Dunwoody Road, Suite 500
Atlanta, Georgia 30342
Phone: 404-256-353
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Sidney M. Gospe, MD, PhD
Division of Pediatric Neurology Head
University of Washington
4800 Sand Point Way NE
B-5552 – Neurology
Seattle, Washington 98105
Phone: (206) 987-2078
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Carla Grosmann, MD
Director Muscular Dystrophy Clinic
Rady Children’s Hospital
8010 Frost Street #400
San Diego, CA 92123
Phone: (858) 966-5819
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Susan T. Iannaccone, MD
Division of Pediatric Neurology Director
University of Texas Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, Texas 75390-8838
Phone: (214) 456-5220
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H. Royden Jones, MD
Neuromuscular Program
Children’s Hospital Boston
300 Longwood Avenue
Boston, Massachusetts 02115
Phone: (781) 744-8671
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Petra Kaufmann, MD, MSc
Associate Director, Pediatric SMA Clinic
Columbia University
Harkness Pavilion, Floor 5
180 Fort Washington Ave.
New York, New York 10032-3791
Clinic Coordinator: (212) 342-0263
Send Clinic Coordinator an email
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Roberto Lopez-Alberola, MD
Pediatric Neurologist
University of Miami Medical Group
1150 NW 14 Street, Suite 610
Miami, Florida 33136
Phone: (305) 243-7100
Email: Send an email
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E. Wayne Massey, MD
Muscular Dystrophy Clinic Director
Duke University School of Medicine
Box 3909 Medical Center
Durham, North Carolina 27710
Phone: (919) 684-5816
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Jerry R. Mendell, MD
Center for Gene Therapy Director
The Research Institute at Nationwide Children’s Hospital
700 Childrens Drive, Room WA 3011
Columbus, Ohio 43205
Phone: (614) 722-2203
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Leslie A. Morrison, MD
Associate Professor
Neurology and Pediatrics
University of New Mexico Health Sciences Center
Department of Neurology MSC10 5620
Health Sciences Center
1 University of New Mexico
Albuquerque, New Mexico 87131-0001
Phone: 505-272-3342
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John T. Sladky, MD
Neurology Division Chief
The Emory Children’s Center
2015 Uppergate Drive, NE
Atlanta, Georgia 30322
Phone: 404-778-2400
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Kathy Swoboda, MD
Pediatric Motor Disorders Research Program Director
Department of Neurology
University of Utah
30 North 1900 East #3R210
Salt Lake City, Utah 84132
Phone: (801) 585-9717
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Jean E. Teasley, MD
Pediatric Neurologist
Children’s Hospital
2924 Brook Road
Richmond, Virginia 23220-1298
Phone: (804) 321-7474
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Ashok Verma, M.D., D.M.
Medical Director, Kessenich Family MDA-ALS Center and MDA Clinics
Department of Neurology
University of Miami School of Medicine
1120 NW 14 Street, Room #1317
Locator Code: C-215
Miami, Florida 33136
Phone: (305) 243-1164
Email: Send an email
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Brenda Wong, MD
Division of Neurology
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45229-3039
Phone: 513-636-4222
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Orthopedics, Physical Medicine, and Physical Therapy

Tina Duong, MPT
Clinical Evaluator Coordinator
Cooperative International Neuromuscular Research Group
Center for Genetic Medicine Research (5th floor)
Children’s National Medical Center
111 Michigan Ave NW
Washington, DC 20010
Phone: 202-476-4110
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Craig P. Eberson, MD
Pediatric Orthopedics & Scoliosis
University Orthopedics Inc.
2 Dudley St Ste 200
Providence, Rhode Island 02905
Phone: 401-457-1550
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Joan Gold, MD
Rusk Institute of Rehabilitation Medicine
New York University School of Medicine
400 E. 34th Street, Suite 518
New York, New York 10016
Phone: 212-263-6519
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Juliane Florence, DPT, PhD
Director of Clinical Studies in Neuromuscular Diseases
Washington University School of Medicine
660 South Euclid
Campus Box 8111
St. Louis, Missouri 63110
Phone: 314-362-6983
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Jason M. Kelecic, DPT
Neuromuscular Clinic Program Manager
Gillette Children’s Specialty Healthcare
200 East University Avenue
St. Paul, Minnesota 55101
Phone: (651) 312-3176
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Marion Main, MCSP, MA
Head Paediatric Physiotherapist
Dubowitz Neuromuscular Centre
Hammersmith Hospital
London W12 0HS
United Kingdom
Phone: +44 20 8383 4734

Eugenio A. Monasterio, MD
Director of Physical Medicine and Rehabilitation
Children’s Hospital
2924 Brook Road
Richmond, Virginia 23220-1298
Phone: (804) 321-7474
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Leslie A. Morrison, MD
Associate Professor
Neurology and Pediatrics
University of New Mexico Health Sciences Center
Department of Neurology MSC10 5620
Health Sciences Center
1 University of New Mexico
Albuquerque, New Mexico 87131-0001
Phone: 505-272-3342
Send an email
More information

Pulmonology and Respiratory

Raouf S. Amin, MD
Director, Division of Pulmonary Medicine
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45229-3039
Phone: 513-636-7945
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John R. Bach, MD
Physical Medicine and Rehabilitation
University of Medicine & Dentistry of New Jersey
90 Bergen Street, DOC 3100
Newark, New Jersey 07103
Phone: (973) 972-7195
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David J. Birnkrant, MD
Director, Division of Pediatric Pulmonary Medicine
The Children’s Hospital at MetroHealth Medical Center
2500 MetroHealth Drive
Cleveland, Ohio 44109
Phone: 216-778-2222
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Ann-Marie Brooks, MD
Georgia Pediatric Pulmonology Associates, PC
1100 Lake Hearn Drive, Suite 450
Atlanta, Georgia 30342
Phone: 404-252-7339
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Magdalen I. Gondor, MD
Pulmonology
All Children’s Hospital
880 6th Street S
ACH Box 7598 Suite 390
St Petersburg, Florida 33701
Phone: 727-767-4146
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Richard M. Kravitz, MD
Pediatrics/Pulmonary and Sleep Medicine
Duke University Health System
DUMC 2994
Durham, North Carolina 27710
Appointment Phone: (919) 684-3364
Office Phone: (919) 684-3364
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Christopher M. Makris, MD
Co-Director, Pediatric Sleep Medicine Program
Seattle Children’s Hospital
A-5937 – Pulmonary
4800 Sand Point Way NE
Seattle, Washington 98105
Phone: (206) 987-2174
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Mary K. Schroth, MD
Pediatric Pulmonary Center
University of Wisconsin Medical School
600 Highland Avenue
K4/942 Clinical Science Center
Madison, Wisconsin 53792-9988
Phone: (608) 263-6420
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Dr. Anita K. Simonds
Consultant in Respiratory Medicine
Royal Brompton Hospital
Sydney Street
London SW3 6NP
United Kingdom
Phone: +44 (0)20 7352 8121
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Wan Chong Tsai, M.D., M.S.
Pulmonary Director
Pediatric Home Ventilator Program
C.S. Mott Children’s Hospital
L2204 Women’s Hospital/0212
1500 East Medical Center Dr.
Ann Arbor, Michigan 48109-0212
Phone: 734-615-3267
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Nanci Yuan, MD
Pediatric Pulmonary Medicine
Lucile Packard Children’s Hospital at Stanford
730 Welch Road 1st Floor
Palo Alto, California 94304
Clinic: (650) 497-8841
Office:(650) 723-5191
More information

Nutrition and Metabolism

Thomas Crawford, MD
Division of Neurology
Johns Hopkins Hospital
The David M. Rubenstein Child Health Building, Suite 2158
200 N. Wolfe Street
Baltimore, Maryland 21287
Phone: 410-955-4259
Send an email
More information

Barbara J. Godshall, MMSc, RD, CSP, LD, CD, CNSD
Pediatric Dietitian
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45229-3039
Phone: 513-636-9285
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Becky Hurst, RD
Clinical Dietitian
Pediatric Motor Disorders Research Program
University of Utah
30 North 1900 East #3R210
Salt Lake City, Utah 84132
(801) 585-9717
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Thomas H. Inge, MD, PhD
Director, Center for Bariatric Research and Innovation
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45229
Phone: 513-636-4371
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Frances D. Kendall, MD
Metabolic Laboratory Director
Horizon Molecular Medicine
1 Dunwoody Park Suite 250
Atlanta, Georgia 30338
Phone: (678) 225-0222
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Nancy Kuntz, MD
Department of Pediatrics
Mayo Clinic
200 1st Street SW
Rochester, Minnesota 55905
Phone: (507) 266-5800
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Kathy Swoboda, MD
Pediatric Motor Disorders Research Program Director
Department of Neurology
University of Utah
30 North 1900 East #3R210
Salt Lake City, Utah 84132
(801) 585-1676
Send an email
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Brenda Wong, MD
Division of Neurology
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45229-3039
Phone: 513-636-4222
Send an email
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Speech and Language Therapy

Annie Aloysius nee Bagnall MRCSLT, HPC
Speech and Language Therapist (Lead Clinician Paediatrics)
Dubowitz Neuromuscular Centre
Hammersmith Hospital
Du Cane Road
London W12 OHS
United Kingdom
Phone: +004 (0)20 8383 3076

Primary Care Physicians

Mark Deis, MD
Pediatric Associates, PSC
2865 Chancellor Drive, Suite 225
Crestview Hills, Kentucky 41017
Phone: 859-341-5400
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Shelly F. Voet, MD
Pediatric Associates, PSC
2865 Chancellor Drive, Suite 225
Crestview Hills, Kentucky 41017
Phone: 859-341-5400
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Genetics

Lisa L. Baumbach-Reardon, PhD
Head, Neurogenetics Laboratory
Department of Pediatrics
University of Miami Leonard M. Miller School of Medicine
1601 NW 12th Avenue
Miami, Florida 33136
Phone: (305) 243-3997
Email: Send an email
More Information

Margaret K. Bradbury, MS
Genetic Counselor, Research Center for Genetic Medicine
Children’s National Medical Center
111 Michigan Avenue, N.W.
Washington, DC 20010-2970
Phone: (202) 884-4925
Email: Send an email
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