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Simply put a listserv 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. Listserv lists give 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 that serve the "disabled" community and their care givers. For more information about other related lists please click here  |
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The actual listserv is a computer program, which maintains a mailing list. The program has a robot which handles all the mails. When someone sends an e-mail to the List Address the robot copies that message and mass 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 trisomy list is set that only list members may post. For more information on how to subscribe to the trisomy list please click here |
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Anyone can add their name to the mailing list by sending a subscribe command to the listserv administrative address. It doesn't cost anything to subscribe, and there are no hidden costs at all. 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 command to the administrative address. I know it sounds very simple but it really is! |
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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 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. |
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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. |
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In reality none. In November 1997 a group of people of whom Karen was a part decided that they could stream line our discussions by forming a listserv. Karen belonged to a number of listservs and so approached Denise and Nick at Avenza about the possibility. Shortly after the trisomy listserv was formed. About 9 months later the list "moved" house over to the Challengenet server. Karen became the list administrator by default. 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. |
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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 in the USA, and through 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. It then struck them that a great way to share their knowledge would be to set up a listserv. Karen belonged to a number of listservs 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. |
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Those on the list represent a number of different countries, including Australia, New Zealand, Italy, the US, Ireland, Belgium, The Netherlands and the UK. 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. |
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The list does not replace the individual medical care that each child 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 child's 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 child 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. |
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A list of common net abbreviations - please click here |
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A list of frequently used net terminology - please click here |
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A list of frequently used emoticons - please click here |
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A humorous, but true look at the natural life cycle of a mailing list - please click here |
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DISCLAIMER |
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| Home | Trisomy List | Wings List | Siblings List || Message Boards | Chats | Rainbow Angels Tribute | Rainbow Families || Candles of Love | The Rock | Where are We? | Links || Other Lists | Trisomy Web Ring | Why Rainbows? || What is a Trisomy? | |
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Visitors Since 1st November 1999 |
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This site was last updated on 12th February 2000 |
