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. 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]
Kim Fine MS, OTR/L, COMT Occupational Therapist West Kendall Baptist Health Physical Therapy & Rehabilitation 16650 N Kendall Dr. Suite 101 & 201, Miami, FL 33196 Phone: (786) 573-6247 [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
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
Christina Jacobsen, MD, PhD Director, Pediatric Bone Program Divisions of Endocrinology and Genetics and Genomics Boston Children’s Hospital Assistant Professor, Harvard Medical School 300 Longwood Ave Boston, MA 02115 Phone: (617) 355-7476 Fax (617) 730-0194
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
Deborah Krakow M.D. International Skeletal Dysplasia Registry UCLA – OHRC 615 Charles E. Young Drive, South, Suite 410 Los Angeles, CA 90095 Ortho.ucla.edu/isdr Phone: (310) 825-8998 Fax: (310) 206-5266 Alisa Zargaryan, Assistant - [email protected] http://isdr.csmc.edu/
Michael Kropf, MD Orthopaedic Surgeon Cedars-Sinai Medical Center 444 S. San Vicente Blvd, Suite 901 Los Angeles, CA 90048 Phone: (310) 248-7320 Fax: (310) 601-4592
Janet M. Legare, M.D. Pediatrician/Genetics 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' Hospital, Delaware 1600 Rockland Road Wilmington, DE 19803 Office: (302) 651-4880 [email protected]
Kira Lurman, RN Clinical and Research Nurse Johns Hopkins University 600 N. Wolfe Street, Blalock 1008 Baltimore, MD 21287 Phone: (410) 955-0317 Fax: (410) 502-2375
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
Dr. W. G. Stuart Mackenzie, MD Pediatric Orthopaedic Surgeon Nemours Children's Hospital, Delaware 1600 Rockland Road Wilmington, DE 19803 Phone: (302) 651-6326 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]
Caleb Rogers, MD Clinical Geneticist Associate Professor of Molecular and Medical Genetics Oregon Health & Science University 3181 SW Sam Jackson Park Road L.103 Portland, OR 97239 Phone: (503) 494-7703
Andrea Schelhaas, MS, CGC Genetic Counselor Perinatal and Advanced Delivery Programs Nemours Children's Hospital, Delaware 1600 Rockland Road Wilmington, DE 19803 Phone: (302) -333-3745 Fax: (302) 298-8952 [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
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Retired MAB Members
Richard Kerbavaz, M.D. Otolaryngology-Head and Neck Surgery
Michael Wright, MB, ChB Institute of Human Genetics
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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
William A. Horton, M.D. Retired, Director, Research Center Shriners Hospital for Children
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 **Deceased
This page was last updated 03/25/2025
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