Medical Advisory Board Members

Julie Hoover-Fong, M.D., Ph.D. (Chair)
Director, Greenberg Center for Skeletal Dysplasias
McKusick-Nathans Institute of Genetic Medicine
Johns Hopkins University
600 N. Wolfe Street / Blalock 1008
Baltimore, MD 21287
Colleen Gioffreda, Greenberg Center Administrator - [email protected]
Phone: (410) 614-0977
Fax: (410) 502-2375

Gary A. Bellus, M.D., Ph.D.
Geisinger Medical Center – Pediatric Genetics 
100 North Academy Avenue
Danville, PA 17822
Phone: (570) 271-6440
Fax: (570) 271-6002

Robert M. Bernstein, M.D.
Chief of Staff
Shriners Hospital for Children – Portland
3101 SW Sam Jackson Park Road
Portland, OR 97239
Phone: (503) 221-3424
Fax: (503) 221-3490 

Michael B. Bober, M.D., Ph.D.
Assistant Professor of Pediatrics
Thomas Jefferson Medical College
Co-Director, Skeletal Dysplasia Program
Division of Medical Genetics
A.I. duPont Hospital for Children
1600 Rockland Road
Wilmington, DE 19803
Phone: (302) 651-5916

Jeffrey Campbell, MD, MS, MBA
Pediatric Neurosurgeon
Nemours Children's Hospital, Delaware
1600 Rockland Road
Wilmington, DE 19803
Phone: (302) 651-5993
Fax: (302) 651-6410

Erin Carter, MS, CGC
Clinical Coordinator/Genetic Counselor
The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
Telephone: (212) 774-7332
Fax: (212) 774-7827

Moise Danielpour, M.D.
Director of Pediatric Neurosurgery
Cedars-Sinai Medical Center
Maxine Dunitz Neurosurgical Institute
8631 W. Third Street, Suite 800 E.
Los Angeles, CA 90048
Phone: (310) 423-7900
Fax: (310) 423-7955

Colleen P Ditro, RN, DNP, CPNP, FAANP
Pediatric Nurse Practitioner
Manager, Clinical Operations, Orthopedics
Nemours Children's Hospital, Delaware
1600 Rockland Road
Wilmington, DE 19803
Phone: (302) 651-6326
Fax: (302) 651-5951
[email protected]

Angela Duker, MS, CGC
Genetic Counselor/Coordinator
Skeletal Dysplasia Program
Nemours Children's Hospital, Delaware
1600 Rockland Road
Wilmington, DE 19803
Phone: (302) 651-4181
Fax: (302) 295-1504
[email protected]

Clair A. Francomano, M.D.*
Professor, Medical and Molecular Genetics
Indiana University School of Medicine
975 W. Walnut Street, IB 130
Indianapolis, IN 46202
Phone: (317) 944-3966 (office)
Fax: (317) 968-1354

Colleen Gioffreda
Clinical Operations Program Administrator
Greenberg Center for Skeletal Dysplasias
McKusick-Nathans Institute of Genetic Medicine
Johns Hopkins University
600 N. Wolfe Street / Blalock 1008
Baltimore, MD 21287
[email protected]
Phone: (410) 614-0977
Fax: (410) 502-2375

Mari Groves, M.D.
Pediatric Neurosurgery
Johns Hopkins Hospital
600 N. Wolfe Street
Phipps 554
Baltimore, MD 21287
Phone: (410) 955-7851
Fax: (310) 423-7862

Jacqueline T. Hecht, Ph.D.
Professor of Pediatrics
Vice Chair for Research
6431 Fannin St., Room 3.136
Houston, TX 77030
Phone: (713) 500-5764
Fax: (713) 500-5689

Scott Hoffinger, M.D.
Pediatric Orthopaedic Surgeon
Stanford University
6121 Hollis Street
Emeryville, CA 94608
Phone: (510) 587-9600
Fax: (510) 857-9569

Dan Hoernschemeyer M.D.
Assistant Professor
University of Missouri Hospital
Pediatric Orthopaedics
204 N. Keene St. ste. #102
Columbia, Missouri  65201
Niki Buckler, Assistant – [email protected]
Phone: (573) 882-1351
Fax:  (573) 884-9898

William A. Horton, M.D.
Director, Research Center
Shriners Hospital for Children
Professor of Molecular and Medical Genetics
Oregon Health & Science University
Portland, OR 97239
Phone: (503) 221-1537
Fax: (503) 221-3451

George Jallo, M.D.
Clinical Practice Director of Pediatric Neurosurgery
Johns Hopkins All Children’s Hospital
601 Fifth Street
Suite 511
St. Petersburg, FL 33701
Phone: (727) 767-4879
Fax: (727) 767-8181

Richard Kerbavaz, M.D.
Otolaryngology-Head and Neck Surgery
East Bay Head and Neck Surgery, Retired.
Berkeley, CA 94704

Deborah Krakow M.D.
International Skeletal Dysplasia Registry
615 Charles E. Young Drive, South, Suite 410
Los Angeles, CA 90095
Phone:  (310) 825-8998
Fax: (310) 206-5266
Alisa Zargaryan, Assistant - [email protected]

Janet M. Legare, M.D.
University of Wisconsin - Madison
Bone Dysplasia Clinic
Waisman Center
1500 Highland Avenue
Madison, WI 53705
Phone: (608) 263-3301
Fax: (608) 262-0530

Mary Ellen Little , BSN, RN
Nurse Navigator for OI and Skeletal Dysplasia Programs
Nemours Children's Hospital, Delaware
1600 Rockland Road
Wilmington, DE 19803
Office: (302) 651-4880
[email protected]

William G. Mackenzie, M.D.
Pediatric Orthopaedic Surgeon
Alfred I. duPont Hosp. For Children
P.O. Box 269
1600 Rockland Road
Wilmington, DE 19899
Phone: (302) 651-5890
Fax: (302) 651-5951

Peggy Modaff, MS, CGC
Distinguished Clinical Genetic Counselor
University of Wisconsin-Madison
1500 Highland Avenue, room 343
Madison, WI 53705
Phone: (608) 262-6228
Fax: (608) 263-0530
[email protected]

Sarah Nikkel, M.D.
Clinical Geneticist
Provincial Medical Genetics Program
BC Women's Hospital and Health Centre
4500 Oak Street
Vancouver, BC V6H 3N1
Phone: (604) 875-3593
Fax:  (604) 875-2376

Ericka Okenfuss, M.S., C.G.C
Certified Genetic Counselor
Skeletal Dysplasia Clinic Coordinator
Kaiser Permanente - Genetics
1650 Response Road
Sacramento, CA 95815
Phone: (916) 614-5177
Fax: (916) 614-4768
[email protected]

Cheryl S. Reid, M.D., FAAP, FACMG*
Medical Director, Horizon NJ Health
Mail: 5 Eaglebrook Court,
Moorestown, NJ 08057
[email protected]

Samantha A. Spencer M.D.
Assistant Professor in Orthopaedic Surgery, Harvard Medical School
Staff Physician, Boston Children's Hospital
Lower Extremity Team, Trauma, Vascular Anomalies, Skeletal Dysplasias and OI
Department of Orthopaedic Surgery
300 Longwood Avenue
Boston, MA 02115
Appointments: (617) 355-6021 AA Emily Woznick
Academic: (617) 355-6617 AA Joni D’Annolfo

George E. Tiller, M.D., Ph.D.
Regional Chief, Southern California Permanente Medical Group
Department of Genetics
Kaiser Permanente
Los Angeles Medical Center
4900 Sunset Blvd., 3rd Floor
Los Angeles, CA 90027
Phone: (323) 783-5612
Fax: (323) 783-5208

David Tunkel, M.D.
Director of Pediatric Otolaryngology
Professor of Otolaryngology - Head and Neck Surgery
Johns Hopkins University
601 N. Caroline St.
JHOC 6161 B
Baltimore, MD 21287
Phone: (410) 955-1559

Karen Turner, PT, MS, BSPTS C2
Physical Therapist
Nemours Children's Hospital, Delaware
1600 Rockland Road
Wilmington, DE 19803
Phone: (302) 409-6874
Fax: (302) 651-6457
[email protected]

Klane White, M.D.
Pediatric Orthopedic Surgeon
Seattle Children's Hospital
OA.9.120.1 - Orthopedics Administration 
4800 Sand Point Way NE 
Seattle, WA 98105
Phone: (206) 987-2109

Michael Wright, MB, ChB
Institute of Human Genetics
International Centre for Life
Central Parkway
Newcastle upon Tyne
NE 1 3BZ
United Kingdom
Phone: +44 191-241-8758
Fax: +44 191-241-8799

Emeritus MAB members:

Michael C. Ain, M.D.
Retired, Associate Professor, Orthopaedic and Neurosurgery
Johns Hopkins Pediatric Orthopaedic Surgery

Elizabeth R. Elder, M.S.
Retired, Research Director

Steven Kopits, M.D. **
Associate Profesor, Orthopaedic Surgery
International Center for Skeletal Dysplasia

Ralph Lachman, M.D.
Retired, Professor, Pediatrics and Diagnostic Radiology
Stanford University

Len Langer, M.D.**
Radiologist, MAB charter member

Kathleen (Dee) Miller*
Retired Senior Clinical Program Coordinator
Greenberg Center for Skeletal Dysplasias

Richard M. Pauli, M.D., Ph.D.*
Retired, Professor, Clinical Genetics
University of Wisconsin

Mary Ann Priore*
Retired Coordinator,  International Skeletal Dysplasia Registry 
Cedars-Sinai Medical Center

David L. Rimoin, M.D., Ph.D.*/**
Director, Medical Genetics Institute
Steven Spielberg Chair and Distinguished Professor of Pediatrics
Cedars-Sinai Medical Center

Charles I. Scott, Jr., M.D.*
Retired Co-Director, Skeletal Dysplasia Program
Division of Medical Genetics
Nemours / A.I. duPont Institute

Joan O. Weiss, ACSW
Retired, Director of Genetic Alliance


*Honorary Life Members

This page was last updated 04/10/2024




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