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

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. 

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 (Agnes, Jane & Tracie – mothers of Lena, Riley & Katie respectively) 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?

Julie and Yaki got tired of the pop ups on Yahoo and the constant problems with the site getting locked down due to heavy traffic. So they decided to buy a new domain name for the site. No one else is asked to contribute to the cost of owning the domain name. No third party companies or special interest groups donate to the site so there is no conflict of interest or special bias within the information we post on the site. We are solely concerned with distributing the most accurate and up-to-date information available on BWS so families can be the best advocates they can be for their children. 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 is the policy regarding posting of doctors' contact information? Family contact information? Individual stories?

It is our policy never to disclose any personal contact information without the explicit written permission from the individual in question. Doctors who are mentioned and whose contact information is given on the site have volunteered to have their contact information available for parents and caregivers. Countless parents and caregivers have benefited from this "open-door" policy and we are extremely grateful for their generous donation of time and experience.

We make it our policy never to include surnames, city of residence or names of hospitals where individuals have been patients when adding stories and tips to our web site. We do this in order to protect the privacy of the families. However, we do allow parents to make their email addresses available on the web site in case other families want to contact them. Of course, email addresses are only included in the stories if the parents (or adults with BWS) specifically state that they want their email address included on their story page.

We will not agree to add stories to the site unless submitted by an adult with BWS or the parent or legal guardian of the child in question with BWS. So even if a parent does not have a computer and the grandparent wants to submit the story, we cannot add it. We apologize for any inconvenience this may cause, but we feel it is a necessary policy in order to protect the families involved.

If I want to join the discussion group, how can I ensure my privacy? 

Anyone who joins any online discussion group should take into consideration that even a "closed" group is made up of individual human beings who could be from anywhere in the world. It is impossible to guarantee that information on a discussion group is not taken and used elsewhere. Therefore it is always wise to think seriously about which username and email address you choose to use when posting to an online discussion group. Some people feel comfortable using their real names and main email address. Others feel more comfortable using a pseudonym and an alternate email address. Whatever you choose, you should always be aware that any information posted on an online discussion group can be used elsewhere without your knowledge.

Accepted netiquette does not accept posting of 3rd party emails without the express permission of that 3rd party. Private disagreements should be kept private and not taken to the public forum of the group.

However, the discussion group moderators reserve the right to delete inappropriate posts or even ban members if they and the group majority feel it is necessary. For more information or to ask about other issues related to the discussion group, you can contact the group moderators at: bwschat-owner@yahoogroups.com.