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The Beckwith-Wiedemann Family Forum was created as a way for people from around the world who are interested in BWS to get support and share information.

The major goals of the Beckwith-Wiedemann Family Forum are (1) to provide a place where people interested in BWS can find information quickly in a variety of languages, (2) to provide a forum for interested people to meet on the internet to discuss BWS related issues (3) to let new families everywhere affected by BWS know that they are not alone. 

To find out more about the Beckwith-Wiedemann Family Forum and it's function, click on the link below:

Beckwith-Wiedemann Family Forum Q&A

For information regarding our privacy policy, funding of our site etc, please follow the link below:

Beckwith-Wiedemann Family Forum policies

 

 


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Below you will find a link to the Beckwith-Wiedemann Family Chat Forum - owned and moderated by three mothers of children with BWS and with hundreds of members from around the world. There you can contact other families who are dealing with BWS. The support and information these families can give is extremely helpful to other families who need to know they aren't alone. This resource is absolutely free. Please join!

Subscribe to bwschat

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Please note that in order to access some links from this site (such as the surgeon's database) you will need to register to the above email list and login to your Yahoo Groups account. If you'd like to visit the discussion group before joining, you can do so by following the link below:

Beckwith Wiedemann Family Chat Forum

 

 

 

 
 

 BECKWITH-WIEDEMANN SYNDROME
TONGUE REDUCTION OUTCOME STUDY


To: Individuals who have undergone tongue reduction surgery by Dr Jeffrey L. Marsh, and their parents

Re: Tongue reduction surgery follow-up study. This study will consist of completing a questionnaire and providing copies of speech therapy and/or dental/orthodontic records that may exist.

Purpose: The long-term results of tongue reduction surgery in BWS are not well documented. Participation in this study will provide individuals and their families who have undergone tongue reduction or are considering tongue reduction, and healthcare professionals, more information about the outcome of tongue reduction.

If you wish to participate in or obtain more information about this follow-up study of the effect of tongue reduction surgery for macroglossia in Beckwith-Wiedemann syndrome, please contact Dr. Marsh at jeffrey.marsh@mercy.net, 314-251-4773 or 621 S. New Ballas Rd, #260A, St Louis MO 63141.

This research proposal has been reviewed by the St. John's Mercy Medical Center Institutional Review Board (IRB).

Jeffrey L. Marsh, MD
Kids Plastic Surgery
620 S. New Ballas Rd., Suite 260A
St. Louis MO 63141
314-251-4772

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: 10/10/2008