Below are a few of the most frequently asked questions about the mailing list. Please click on the question for more information.
Simply put an e-mail list is an e-mail based mailing list. It is just a way of using e-mail to support and share information amongst a group of people who have a common interest. In the case of the Trisomy list that common interest is Trisomy and related disorders.
Consequently a list gives you a way to have an open discussion with dozens or even hundreds of people around the world on just about every topic imaginable. There are well over a couple of hundred mailing lists that serve the "disabled" community and their care givers. For more information about other related lists please go to the miscellaneous button on your left.
The actual list is a computer program, which maintains a mailing list. The program has a robot, and when someone sends an e-mail to the List Address (firstname.lastname@example.org) the robot copies that message and mails it to the e-mail address of everyone who is subscribed to the list. Everyone on the list can then read the original mail and either leave it at that, or, respond if they want to contribute to the discussion.
The wings list is set that only list members may post for everyone's safety and to avoid junk mail or spam being sent to the list.
It doesn't cost anything to subscribe, and there are no hidden costs at all. There is no need to formally belong to a specific group, to make a donation or to share personal information even with the list administrators.
Anyone can add their name to the mailing list by sending a subscribe command to the list robot.
Similarly if you want to unsubscribe for whatever reason (you don't like it, too much mail, or simply going away on holidays) you simply send an unsubscribe or vacation command to the administrative address.
I know it sounds very simple and just too easy but it really is!
Other than your e-mail address, no-one (not even the list administrator) has access to any information about you other than that which you give. Archives of all mails are kept and can be accessed by anyone, so don't say anything you don't want others to read (of course). The benefit of having archives is that they can and do help so many others.
The list is based on e-mail so is not secure and its an un-moderated list so it is not recommended that you post personal details such as your address and phone number to the list (if you want you can e-mail someone privately). And never, ever post such things as credit card or bank account details on the internet unless you are positive you are doing it over a secure connection.
We have tried to make the lists as "safe" as possible. The list of who's subscribed is available only to the list administrator. If someone is caught sending junk mail to the list then they are unsubscribed immediately no questions asked!
If someone has an announcement to make about different organisations, products, publications, virus warnings etc they should post it through the list administrator. If it's appropriate they will post it to the list.
Again we try and make the list as safe as possible. Consequently the list does NOT accept attachments of any kind. That includes pictures, html emails and the like. Mail to the list is sent and distributed in plain text - so no viruses, worms or trojans can come through list mail. In all our years we have NEVER had a virus or the like get through to anyone's computer via the list
Many people do want to share pictures and such - in those cases please email Karen and she will place them on a web page so that everyone can see.
The Wings list is set so that pictures and other attachments cannot be sent to the list. This is to help prevent the spread of viruses and other nasty bugs through the list. For this same reason the list will only post email in plain text, it will not send through emails sent in HTML (those emails with "pretty stationary" and text. HTML emails allow macros to be embedded in them and this is a potential source of computer nasties.
Many people do want to share pictures and such - in those cases please email Karen and she will place them on a web page and send you the URL which can then be posted to the list (and your other friends and family) so that everyone can see.
In reality none, and that is our preference. In November 1997 a group of people of whom Karen was a part decided that they could stream line the discussions amongst themselves by forming a list. Karen belonged to a number of lists and so approached Denise and Nick at Avenza about the possibility. Shortly after the trisomy lists was formed with Karen as the owner by default. About 9 months later the list "moved" house and has had to move a number of times to avoid advertisements and other problems. We have been with Freelists for a number of years now and are more than happy.
At one point Sue and Karen (the then list mums), along with list members at the time, decided that there was a real need for a separate sister list especially for those whose precious little ones had gained their angel wings. Sue agreed to take over the work of being the list administrator for the Wings list. Unfortunately Sue got busy with having a family and the job of Wings administrator has since passed to Jan and now Mandy.
Final decisions rest with the list administrator. We would like to be able to say that the list is a democracy but for very practical reasons it can't always be run that way, though we do try where possible. Members on the list come from a huge range of backgrounds and countries. As a result there are many cultures and beliefs represented. Similarly most people belong to a variety of organisations, perhaps the most common being SOFT, the Chromosome 18 Registry and Research Organisation, CDO and Unique. That however is the only link. The philosophy of the list is that we support all groups who help our children and their families but we have no vested interest in any one group to detract from our primary role - to support each other.
Karen lives in Sydney, Australia. In 1994, (despite having worked in the area of developmental disability as an occupational therapist) she had never heard of Trisomy, except for Trisomy 21. That is until she received a phone call from her son's doctor one day telling her that he had something called "Trisomy 18" or "Edward's Syndrome". In Australia there was no support network and very little knowledge on the syndrome. As she searched she found that the knowledge of Trisomy, be it 18, 13 or any other number, was limited everywhere. Eventually she found SOFT, and found that most of the "real" knowledge and understanding of what she and Alex were going through came from the families.
But it was rather expensive to keep phoning families in the States or UK and it took too long for mail to go back and forth. One day she discovered the internet.......... The internet enabled her to talk to doctors and families anytime, to make new friends who understood.
She found that in reality there were a lot of people "out there", they met on bulletin boards or by word of mouth. Unfortunately they found that bulletin or message boards were open to abuse and legal problems. Many people and organisations, including Trisomy Online, have tried and failed to maintain message boards relating to trisomy over the years. It then struck them that a great way to share their knowledge and support in a practical yet protected way was to set up a mailing list. Karen already belonged to a number of lists and so asked around. As a result the "Trisomy List" was born. The hope is that not only will we be able to share our knowledge but that special caring and support that Trisomy families also possess.
Those on the list represent a number of different countries, including Australia, New Zealand, Italy, the US, Ireland, Belgium, The Netherlands, South Africa, Singapore, Thailand, the UK and probably many more. We are truly international. The people who subscribe to the list are many and varied. There are parents, doctors, grandparents, therapists, teachers etc. all who wish to learn and understand more about Trisomy and share their experiences with our special children. But primarily the subscribers are parents of Trisomy children. Some have lost their children, some are coping with the day to day care of children and others have just found out about their child's diagnosis. Together we draw on our collective experiences and above all our love for each other.
The list does not replace the individual medical care that each individual receives from their own doctor. So although medical information and experiences are freely shared on the list, this information should be discussed with your own physician before any treatments or changes in treatment are made.
The reality is that no-one has any magical answers, there are no experts in the field of Trisomy and what works for one person/family may not apply to another. Few doctors will possibly see and treat more than one child with a rare Trisomy in a lifetime therefore specific knowledge is limited. By sharing information we are in a better position to make informed choices and hopefully better help our children and ourselves.
When people first get on the internet, and when they first start using emails, they are often surprised and confused by an apparently different language of abbreviations that is often used. To help we have compiled a list of some of the most common net abbreviations - please click on the mouse
Just as common as the confusing abbreviations used in emails and on the internet is the use of computer and internet jargon. For example "cross-post", "flaming" etc. For your convenience we have compiled a list of some of the most frequently used net terminology - please click one the mouse
Because it is hard to convey emotions in e-mails and on the net - emoticons - typed expressions of emotion have come into wide use. Click on the mouse for some of the more commonly used emoticons and an explanation.
A humorous, but true look at the natural life cycle of a mailing list - please click on the mouse
If you have any problems, concerns or suggestions regarding the Wings List please do not hesitate to contact Mandy or alternatively Karen.
For more information about the Wings list please follow the links below.