Annual Clinic

under the auspices of the Beckwith Wiedemann Research Team

 

The 2004 Clinic in St Louis, Missouri will be July 10th.  If you wish to attend please contact Cindy Terrill at Terrill_c@kids.wustl.edu

PLEASE NOTE!: we will place a priority on families that we have not seen and families that have more than one family member with BWS (parent child pair, siblings, grandmother-parent-grandchild).

 
 

What is the Beckwith-Wiedemann Research Team's Annual Clinic all about?

 

Countdown to the Annual Clinic:
The BWS researchers from Washington University School of Medicine together with their esteemed colleagues from other medical schools hold an annual clinic for BWS families. The clinic offers families a unique opportunity to meet one-on-one with the leading BWS researchers and specialists and to have all their questions and concerns addressed personally. Participating families are asked to take part in on-going research aimed at getting a better understanding of BWS, and to donate blood samples of the relevant family members for genetic tests as part of the BWS registry. This clinic is offered free of charge for families participating for their first time. Date and location of the annual clinic will be published on the website and posted on the discussion group as they become available.

  • The clinic in St Louis will be held every even year...'04, '06, '08 etc.

  • The clinic in Baltimore will be held every odd year...'03, '05, '07, '09 etc.

The clinic is 'shared' between two cities as the researchers are split between the two. One year the clinic is held at St Louis Children's Hospital, the next year in Baltimore. Clinics take place in the summer, generally around the end of June.

The 2004 Clinic will be held in St Louis, Missouri

 July 10.

The final list of participating medical professionals this year has not yet been set. As soon as that information becomes available, it will be posted here. The following is a list of participants at the 2003 clinic:
 

Michael R. DeBaun, MD, MPH - Principal Investigator of The BWS Registry

Associate Professor of  Pediatrics and Biostatistics


Andrew P. Feinberg, MD, MPH -  Clinical Geneticist, Molecular Biologist
 

Lynn Marty Grames, MS - Speech Therapist

 

Jeffrey L. Marsh - Pediatric Plastic Surgeon
 

David Molter, MD - Asst Prof of Otolaryngology

For more information about the annual clinic or to add your information to the BWS Registry, please contact Cindy Terrill at: bwsregistry@kids.wustl.edu

The BWS Family Conferences

Every other year, the Beckwith Wiedemann Children's Foundation holds a conference. These conferences feature guest speakers in the various fields associated with BWS. As a general rule of thumb, the conferences take place in June and are coordinated with that year's Annual Clinic. The 2004 Conference will take place from July 8th-12th in St Louis, MO.  During the conference, on July 11th, there will be approximately six specialists giving presentations based on their experiences and the update from The Registry. The final agenda has not been set for Sunday July 11th, but when it is, it will be posted here.

Families who want a formal in depth evaluation for a partial glossectomy should make arrangements to see Dr. Jeffrey Marsh earlier in the week.

For More information on the BWS Family Conferences, please contact Cheryl Hendrickson at: BWCFcheryl@aol.com

 

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web master:

Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.

this page last modified: Friday April 06, 2007