|
The BWS medical professionals listed on the
this page are some of the leaders in
their respective fields. As BWS is a rare condition, our local healthcare
providers often lack the knowledge and experience to answer specific medical
questions related to BWS. The BWS medical professionals listed on the website
volunteer their valuable time with no fee by answering questions and concerns
directed to them via email by BWS affected families, and for this we are all
grateful beyond measure. The medical professionals also regularly update the
Beckwith-Wiedemann Family Forum on new information and research developments
with regards to BWS. Hence it is recommended to review the
Doctors notes on the website and to ask in the
discussion group before contacting the medical professionals in order to
save their time.
~~~~~~~~~~~~~~ |
 Bruce Beckwith, M.D.
88
Brookside
Missoula,
MT 59802
beckwithbrowning@earthlink.net
View
A Note From Doctor Beckwith
~~~~~~~~~~~~~~ |
 Dr. Peter Choyke: General Imaging questions on BWS
Bldg.
10, Room 1C660
Dept. of Radiology
National Institutes of Health
Bethesda,
MD 20892-1182
pchoyke@cc.nih.gov
View
Notes From Doctor Choyke: (1) Scans and What to Look At; (2) Fasting Before
Ultrasound Scans
~~~~~~~~~~~~~~ |
|
 Michael
Debaun, M.D., MPH
- Pediatric Oncologist, Epidemiologist
St. Louis Children's Hospital
Division of Pediatric Hematology Oncology
Washington University School of Medicine
660 S. Euclid Avenue
CB - 8208
St. Louis, MO 63110
office: 314-286-1186
fax: 314-286-1195
Debaun_m@kids.wustl.edu
View
Dr. Debaun's
Recommended Tumor Screening Protocol for BWS
Debaun started the BWS Registry at the
National Cancer Institute in 1994 and the Simpson-Golabi-Behmel Syndrome
Registry, together with Scott Saunders, MD, PhD, at Washington University
School of Medicine in 1999.
~~~~~~~~~~~~~~ |
 Andrew Feinberg, M.D., MPH
- Clinical Geneticist, Molecular Biologist
Johns Hopkins University
School of Medicine
Room
1064, Ross Bldg.
Baltimore,
MD 21205
Phone:
(410) 614-3489
FAX:
(410) 614-9819
afeinberg@jhu.edu
At Johns Hopkins School of Medicine, Feinberg has
been working on the genes involved in BWS since 1987. He discovered several
genes associated with BWS and is now looking for the gene(s) for IH.
~~~~~~~~~~~~~~ |
|
 Dr. Jeffrey Marsh
- Pediatric Plastic
Surgeon
Kids Plastic Surgery
St. John's
Mercy Medical Center
621 S New Ballas Road
Suite 260A
St Louis, MO 63141
Phone: (314) 251 4772
Fax: (314) 251 5772
marsjl@stlo.mercy.net
Common Questions for the Surgeon About Tongue Reduction for Individuals
with Beckwith-Wiedemann Syndrome (BWS)
You can contact Dr.
Marsh's secretary, Kristen DeRousse, at:
Tel: (314) 251-4773
To find out more about
the Kids Plastic Surgery Clinic, email:
derokk@stlo.mercy.net
Dr. Marsh is a board certified plastic surgeon and (as of March 2007) has
examined 248 BWS patients and
performed 180 tongue reductions. Dr Marsh has never had to
re-reduce a tongue which he initially reduced.
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|
|
As a dysmorphologist, Martin has a keen interest in overgrowth
syndromes and is particularly focused on IH. He started the IH
Registry at Washington University in 2001.
~~~~~~~~~~~~~~ |
Lynn Marty Grames, MA, CCC-SLP
Speech-Language Pathologist
St. Louis Children's
Hospital
One Children's Place
St. Louis, MO 63110
Phone: (314) 454-2443 (voice mail)
FAX: (314) 454-2380
lynnmg@bjc.org
~~~~~~~~~~~~~~ |
|
Scott Luhman, MD
- Orthopedic Surgeon
Luhman specializes in the orthopedic
treatment of the leg length discrepancy associated with
hemihyperplasia.
~~~~~~~~~~~~~~ |
|
Barbara Zehnbauer, PhD, FACMG
- Clinical Molecular Geneticist
Zehnbauer is the director of the
Washington University Molecular Laboratory, which offers clinical
testing for BWS.
~~~~~~~~~~~~~~
|
|
Linda Piersall,
MS - Genetic Counselor and IH Database
Manager
~~~~~~~~~~~~~~ |
|
Jennifer Ivanovich, MS
- Genetic Counselor
~~~~~~~~~~~~~~ |
|
Cindy Terrill, CCRP
- BWS Database Manager |
