World Arnold Chiari Malformation Association
 Group Mail Ettiquette

** The WACMA Group Guidelines **
as adopted from The Short Course on Mail Etiquette:

Please read this carefully BEFORE sending a public message to the group.  

1) Topic- Stay on the general topic. If the topic of the group isn't religion or lava-lamps,
 please don't carry on conversations about religion or lava-lamps. If you like to send uplifting 
 poems, jokes, or forwarded e-mails to the people you meet online, that's good but please do so 
in the appropriate place. The WACMA Chiari group isn't the appropriate place. The WACMA-Friends 
group is an appropriate place.
You can find it at: 
(There are literally thousands of groups and mailing lists. If this one is not 
what you are looking for, try other ones.)

2) Subject field: Use a descriptive subject in the subject field of your message. 
"Digest Number 1210" is not descriptive. If your subject field is "Is slurred speech 
a symptom?" or "I'm new and need help" it's more likely to provide you with feedback 
than a non-descript subject line. 

3) Private mail- Never, under any circumstances, 
copy a private message (or any part of a private message) 
into the group mail without the senders pre-approval. 
Private mail is generally intended to be just that- private.

4) Quoting/Copying/replying to the Digest- If you are responding to one or two comments
 in a long letter, just re-quote the comment(s). The whole group doesn't need to read the 
entire letter again. Signatures and extraneous information should always be snipped out. 
This includes sending the entire digest back to the group. If you receive the digest 
version of the group correspondence, please be careful so that you don't send the whole 
digest back to the group if you are answering a question that was in the digest OR if you
 are just posting a general message to the group.  

5) When responding- Take time to comprehend what has been written before responding,
 especially if the message makes you angry. The diversity of backgrounds, cultures, 
and writing abilities sometimes makes e-mail communicating difficult. The lack of body 
language and facial expression adds to the difficulty. If you don't understand a particular 
item, let the sender know rather than jumping to an incorrect conclusion. *IF you read 
something that makes you angry and feel that you MUST reply, do so in private mail.*  

6)Replies/me too's: If you want to reply to a public message and you're not sure if 
your reply should be sent in private or to the whole group, send it via private mail. 
If you're sure it's of interest to the whole group, send it to the whole group. Tip: 
if your reply begins with a personal name such as "Dear Steve" .. the reply should probably 
be sent in private.. 

7) Oops!- If someone posts an off-topic or inappropriate message, let the mailing list 
managers(s) deal with them. DO NOT REPLY TO IT IN PUBLIC. If you just absolutely 
can't resist replying- do it in private e-mail, not to the group.  

8) Unsubscribing- If you wish to unsubscribe from a group, simply do so by sending 
the appropriate commands to the mail responder, or ask the list managers to unsubscribe 
you in a private message. Saying goodbye in public is fine, but taking a parting shot at 
the group or an individual is not.

9) If a moderator declares anything "Off Topic", that means no further public discussion/comments
 are welcome.  Again: If you just absolutely can't resist replying- do it in private e-mail, not 
in public. This also means you need to be sure that something is okay to respond to in 
public *before* you post a response. If you get the group messages in the digest 
version, you may have to scan through the daily online messages in order to see if 
a topic has been recently declared off topic.   

10) Mass mailings (and any message that says "Pass this on.."), virus warnings, 
"test" messages, messages that are mainly intended to advertise a product 
or service, electronic greeting cards.. etc. should not be sent to the group 
under any circumstances. These sorts of messages are generally considered to 
be "spam" (or useless, off topic, hoaxes.. etc..).

11) Do not post negative comments or implications about any specific surgeon, 
doctor, nurse or hospital/clinic. Due to current HIPAA laws in the U.S., they 
cannot respond or tell their side of the story or say anything about you. 
You are welcome to respond in PRIVATE about any negative experiences you've 
had-but you may not do so in our public forum. 
12) If you have any complaint or comment, question or suggestion about the 
management of the group or the group guidelines, address them privately to 
the list managers listed below. The same goes for e-mail problems. If you 
suspect you (or we) have an e-mail problem let us know, but do not write to 
the entire group. The group can't do anything about e-mail problems. The WACMA staff 
may be able to solve your problem or suggest solutions because they have staffers 
who are experienced in solving such matters, plus they have access to your particular 
account and can make changes as needed. The group forum is not a place to discuss these items. 

You can directly e-mail the group leaders anytime at:

They will be happy to help you.

Their individual e-mail addresses are:
Chip -
Bernard -
Ann -
Sandi -

13 *Guidelines- Read and follow the guidelines that apply to the mailing list(s) 
that you are subscribed to. It is your responsibility to know the rules BEFORE you jump in. 

*If any group member does not, cannot, or will not abide by these guidelines 
they may be removed from the group permanently, without warning or notice. 
If you do get a warning, it's best to consider how you reply to it before 
firing off a nasty flame-o-gram. If you got a warning, you were given a break. 
In some cases; 2 or 3 or more breaks. The moderators spend many hours keeping 
the group going. They've all been doing it every single day for 6 - 9 years, 
and they donate their time and talents so this group can exist.   

Other notes on internet etiquette: 
Because this group has become the largest Chiari group in the world, we tend to 
get bombarded with messages which advertise all kinds of things, including other 
"support groups" and online "communities" that have 1 or 2 members. If you want to 
promote your Chiari support group or website, please just write to one of our staff 
members and ask for permission. 

If your group or your site has something to add to ours, we'll be glad to help 
promote you. If you are duplicating what we and another 40 or 50 groups are doing, 
we may not be interested. 

ALL messages to the group should only be addressed to the group (  
If you want to send the same message to other groups or additional recipients, send them a 
separate message. Addressing group messages to anyone other than the group causes duplicates, 
confusion, and additional work for the moderators. (We don't like that :) 

Stay clear of "hot topics" such as Politics, Abortion, the Death Penalty, Gun Control, 
War, Welfare.. etc. On occasion other topics will be declared "Off Topic" due to 
differences and/or strong emotions/opinions on any side of the issue. If something IS declared 
Off Topic and you want to continue to discuss or argue the issue, it's best you do so in a 
group or forum that is dedicated to the issue. See #9 above if anything about this is unclear to you.

This group is focused on providing accurate and up to date information directly related 
to Chiari Malformations, but we are not equipped to deal with every aspect of life 
that a person with a Chiari may face- one example of this is financial issues. If you have
financial problems we want to provide you with information on how and where to get 
assistance, but we can't allow the general membership to use our group as a place to 
solicit donations or sanction a fundraiser.

There are 2 exceptions to this and they are "Wishes and Rainbows", 
and "ASAP". Both are non-profit organizations with a record of making 
significant contributions to the chiari community.  

It's also hard for some people to read. Turn OFF your 
caps lock off when you post to the group.  
"Signatures" should be kept to a maximum of 5 lines of text, or less. 

Names and/or e-mail addresses shouldn't be used in the "subject" field. 
This is standard etiquette, but not everyone knows standard etiquette. 
Part of the reason for this is that many people share the same name as someone 
else. If "Linda" is used in the subject of a message, there may be 30 "Linda's" 
who feel uncomfortable that their name is used in correlation with something 
they have nothing to do with or a topic in which they don't share mutual beliefs.  

The WACMA group leaders will try to protect your personal information, even if 
you don't. (We know that some members are new to the Internet, and we'll try 
to save you from making any major mistakes) We will delete public messages 
that include home addresses, phone numbers or any information we feel should 
not be posted in public.

WACMA staff may also delete any message(s) that may be off topic, inappropriate, 
or encourage off-topic or inappropriate responses. 

Please don't be offended if one of your messages is deleted. WACMA staff is most
concerned with providing Chiari information and on topic discussions. There may be 
times when we see something that is questionable or has potential to draw the group 
into an off-topic discussion. If we toss it out please don't take it personally. 

WACMA moderators may remove anyone from the group at anytime without warning or reason. 
You may object, however the final decision whether to allow you in or keep you out is 
the sole decision of the moderator that removed you. If you find yourself in this position 
and wish to be reinstated you will need to work this out with the moderator who removed you. 
In other words if moderator #2 removed you from the group, moderator #3 can't let you back in.  
If you do not know which moderator removed you, you can write to all moderators at:


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