What is the Beckwith-Wiedemann Family Forum?

What is the Beckwith Wiedemann Family Forum?

The Beckwith Wiedemann Family Forum is a growing Internet community comprised of families from all over the world who are affected by BWS and got together in cyberspace in order to exchange support and information related to BWS between each other. Most of us are parents to children with BWS, some of us are adults with BWS and amongst us are also some dedicated grandparents and aunts/uncles to children with BWS.

What is included within the Beckwith-Wiedemann Family Forum?

The Beckwith-Wiedemann Family Forum is comprised of two independently owned elements:

• Web site - which contains a wealth of information collected from families affected by BWS as well as from leading medical professionals specializing in BWS

• Email discussion group (bwschat) - hosted at Yahoo!Groups which facilitates the exchange of BWS related information and support, as well as a lively discussion between its members. The Yahoo!Groups also contains member only areas in which members can upload and share files and photos as well as search the message archive.

Who runs the Beckwith-Wiedemann Family Forum?

The Beckwith-Wiedemann Family Forum is not a formal organization, and does not have a president, board of trustees and such. Julie (mother to Brit, who has BWS) owns  and manages the website. There is also the discussion group which we encourage parents to join. Three democratically nominated members share administration and moderator responsibility for the discussion group. Although the web site and the discussion group are owned and moderated independently, we feel that the discussion group can greatly benefit families affected by BWS, so we are more than happy to recommend the group to new families. Most importantly - everyone volunteers their experience, knowledge and time to lend friendly advice and a comforting shoulder to one another, and this is what gives the Beckwith-Wiedemann Family Forum its warm feeling of one big extended family - thus the similar names for the web site and the discussion group despite their independence. In other words, Julie has no power to affect what happens in the discussion group any more than any other parent who is a member of the group. Likewise, Julie is the sole manager of the web site and although she takes recommendations from parents and the moderators of the discussion group, the final decision on what to include is up to Julie.

Who Funds the Beckwith-Wiedemann Family Forum?

No one, sort of. The Beckwith-Wiedemann Family Forum is funded by Julie and Yaki, with no third party contributions. In any case, we don't accept advertisements on the site. That means we can't put up a big flashing sign asking visitors to eat at the family-owned diner of one of the discussion group members. Sorry. ;-)

What does it cost to become a member of the Beckwith-Wiedemann Family Forum?

Nothing, zilch, zero. As there are no operating expenses, there are no membership fees either. Our sole aim is to provide information to individuals who need it. We don't accept membership fees and we don't require anything from families visiting our site.

What resources are available exclusively to members of the discussion group?

In addition to the participation in the Yahoo!Groups discussion/chat forum, members can also access and upload various documents (such as BWS brochures), databases (such as the database of surgeons performing tongue reduction surgery which is comprised of entries from families sharing their experience), family photos, as well as a searchable archive of the group’s messages.

How do I join the discussion group: Beckwith-Wiedemann Family Chat Forum?

You have three easy options to join the Beckwith-Wiedemann Family Forum:

1. Click the join button on the Yahoo!Groups website

2. Enter your email address and press join on the our website

3. Subscribe by email. To do so, simply click here
   (bwschat-subscribe@yahoogroups.com).

Who are the BWS researchers and specialists and how can I get in touch with them?

The BWS medical professionals listed on the Doctors and Researchers page on the website 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.

What is the annual clinic?

The Beckwith-Wiedemann Research Team holds 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. The annual clinic usually takes place in June. Date and location of the annual clinic will be published on the website and posted on the discussion group as they become available.

What is the relationship between the Beckwith-Wiedemann Family Forum, the BWSN and the BWCF?

The Beckwith-Wiedemann Family Forum, the BWSN and the BWCF are three separate entities and there is no relationship between them. Some families from the Beckwith-Wiedemann Family Forum find it beneficial to participate in the bi-annual BWS conferences and family get-togethers that take place in the USA, and are coordinated by the BWCF. Cheryl Hendrickson from the BWCF is also often able to leverage the BWCF’s non-profit organization status in assisting families to provide appropriate medical care for their children with BWS (financial assistance in the form of convincing health insurers to approve surgeries with the leading medical professionals, helping with discounts on flights and accommodations, etc.).

Who can I contact for more information? 

For information related to the Beckwith-Wiedemann Family Forum Website or for more information on Beckwith-Wiedemann Syndrome you can email Julie at julie@beckwith-wiedemann.info. For information related to the Beckwith-Wiedemann Family Chat Forum you can email the group’s moderators at:
bwschat-owner@yahoogroups.com. 

Is the information I share with the Beckwith-Wiedemann Family Forum kept confidential?

Any information written in correspondence with the manager of this web site will be kept strictly confidential unless the author specifically requests otherwise (i.e. when submitting tips or stories to be added to our web site). Even in the instance of stories or tips being added to the web site, only first names are retained in the stories and only state/province and country information are retained, in order to protect the privacy of those submitting stories or tips. Any requests for information, support etc will be held in the strictest of confidence and will not be passed on to third parties.

If you choose to join the Beckwith-Wiedemann Family Chat Forum discussion group, all information shared there is closed to non-members. Only members can view the messages. But as in any on-line discussion group, there is no way to guarantee the confidentiality of information shared. Therefore, please give serious thought to the content of your messages before posting.

Wishing good health and happiness to all the families, 

Yaki

Brit’s daddy