Everyone is welcome to sign up for the Forum. 

The CADASIL Foundation periodically will  send out announcements about key information or activities everyone including patients, and extended list of friends, supporters, professionals, educators, press, etc. via the this Discussion Group List.  If there is breaking news regarding CADASIL, it would be sent both via this Discussion Group List.  

Welcome To the New and Improved Announcement and Discussion Message Board
 PLEASE PRINT OUT THESE INSTRUCTIONS TO ASSIST YOU WITH ENROLLING.

Since the we have had many persons e-mailing us inquiring to see previously post, we have upgraded the message announcements and discussion message board.  This message board has the ability to view previous posts from the beginning of February 2007 and from now on. This message board will replace the List Server.

Please do not open another subject until you post will not fit into a subject already posted. 

Please follow the below instructions step by step to enroll. 
Once you have enrolled it will be simple to use.

Go to http://www.websitetoolbox.com/tool/register/cadasil/register or click on this box  

There are three things you have to complete and the rest is optional.  

Due to security each time you go to the board, you will login.  (If you have any problems please contact info@cadasilfoundation.org and we would be glad to assist you.
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Once enrolled the screen to login in will look like
CADASIL Together We Have Hope Announcements and Discussion Group

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When someone has left a message, you will receive an e-mail which looks like this;

This email has been sent to inform you that a new reply has been posted
 in your Website Toolbox message board. To view the thread go to:http://www.websitetoolbox.com/tool/post/cadasil/vpost?id=2118169
A preview of the posted reply:
Thread ID: 2118169
Date: Today
Username: moderator
Attachments: 0
Subject: Positive Attitude
Message:
This is a test to show others what the e-mail will look like. Just Click on the link above and it will go to the message board. Once you get use to this is will be a valuable resource for everyone to review items.
Thank you,
The Website Toolbox Team
http://www.websitetoolbox.com

You will be able to login and reply to the message if you would like.

You can still contact a person if you wish:  To contact a person privately you will simplify click on the Author and you will have an option to e-mail the person.

 This message board will replace the List Server.  Once get use to this board it will be a good resource for viewing previously post and important items.

If you have any trouble please e-mail info@cadasilfoundation.org and we will assist you.

Billie Duncan-Smith
Director

VERY IMPORTANT - Please read below the Etiquette Policy

The list host reviews all requests to join our list to assure that we maintain a healthy community. The list host will normally honor your request within 24-48 hours. After you receive an acknowledgment from the list server you can simply send messages to the list address and watch for the response.

E-mail Discussion Group Lists allow people to communicate on their own time lines, or to simply "hang back" and observe. This is different than an on-line chat as the readers may not receive your message for hours and will respond when they have a moment (or are awake - we have members from literally across the world!). This way we all can communicate on our own schedules. Unlike discussion boards, these messages have a sense of timeliness to them as they pop into your in-box.

ETIQUETTE DISCUSION FORUM

The following are a few guidelines to use as we communicate on the various discussion lists. These suggestions will help us to have a healthy and encouraging interaction, to be less confused about who is who, and will keep the messages readable. If you would like to reply to a person with a personal message please use their e-mail address and do not hit reply as it goes to everyone. Please remember you do not need to reply to the forum unless you would like to.

RESPECT - Our number one "rule" is to always show respect for others in what you post, and particularly in how you respond. Sometimes discussions can "hit a nerve" and you reaction is to start typing fast an furious - please consider waiting a few hours, until the next day, or perhaps even using the delete button instead of sending off a quick response. We are here to encourage, support and educate each other with our experiences. We all are suffering and have bad days and better days. Please be patient when others have those same ups and downs.

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PRIVACY- We are a family and when we share it is expected that we will honor each other's privacy will be honored. It is not OK to talk about people and experiences shared on this list with others or behind people's backs (i.e. off-list). Part of being a family is knowing that we can get through the "tough stuff", the disagreements, the troubles, and still love & encourage each other. Sometimes you may want to share message information with a medical professional or some other person. You must remove all personally identifying information being sharing any information is this way.

MESSAGE SIGNATURE -Sign your message with your name, and the name of the CADASIL person and their age. This helps us to keep track of each other and to not be confused by who is who. It gives us reinforcement every time we read a message. For example:
Regards, Dean (Lindy - 20).

CHANCE THE SUBJECT - Message content tends to drift away from the original topic after a while. Please don't change the subject unless it no longer matches the content of the message or your reply. Making the subject applicable to the message content can help us to find messages later ("Backfilling Questions" is much more insightful than "Drug Questions"). Please don't change the subject to put a person's name in it - list messages are really for the benefit of everyone and while your comment might be directed to only one person everyone will be reading. When changing a subject it's courtesy to make the new subject: "New Topic - [was:Old Topic]". Some of us can use software that "threads" messages - i.e., it pull messages together by the subject so that we can follow "threads" of messages even when they don't all come at once. If the topic of a message changes as it is replied to over time - feel free to change the subject and keep going. Don't change the subject every time, though as that is too confusing. Blank subjects are not good.

DELETEING MESSAGES - Always feel free to delete a message. If we use good subjects then you will generally know what you are missing without having to read the message. Some messages might be too close to home for you to read - it's OK to skip them by deleting. We all have emotional limits and time constraints.

TOPICS OF DISCUSSIONS -All topics are OK. We have talked about Do Not Resuscitate Orders, decisions to have or not have a treatment, decision on care, etc. Some topics may be particularly sensitive to others depending on what's happening in their life at that moment. I promise that we all will have differing opinions on various issues - it's the variety that we can learn from - but YOU DO NOT need to agree always. Likewise you do not need to feel obligated to convince someone of your opinion either. We are here to share and care for each other while respecting each other.

READ THE ENTIRE MESSAGE BEFORE YOU REPLY - Before you reply to a message that really impacts you, consider reading the subsequent replies that others might have already written, if any. That way you can reply to the entire discussion, not just an early message. What you have to say might have already been said. This is particularly valuable when there is a lot of discussion going on. Sometimes we need to say “me too”, other times we don’t.

ACCEPTANCE OF OTHER'S DECISIONS AND BELIEFS - Please do not assume that your experience is someone else's. One thing that this list has taught me is that no progression of CADASIL is the same as any other. Be open to hearing how someone else's experience might have been - it could be what you experience next week! Likewise - if someone speaks firmly and is in contrast to your experience or knowledge - please remember that we all have some tunnel vision - We do not believe that anyone here intends to offend anyone else (if they do we can and will take care of that off-list). Try to not react by pounding out a message as soon as you are offended. Wait a few hours - try to understand what the intent, oversight or experience of the author was prior to assuming that they meant to hurt anyone else. Then reply gently! REMEMBERRESCEPT!

ATTACMENTS AND PICTURES NOT ALLOWED - The discussion lists do not allow attachments or pictures or color fonts, etc. Announcements from the foundation will post new information sometimes by attachments only.

PLEASE REMEMBER -It is up to each of us to “self-moderate” -- if there are a lot of messages being sent or strong emotions or opinions being shared – remember that your quick reply might just be adding to the situation. Our “self-moderating” request is that you write your email, and then perhaps wait a few minutes, re-read it, and then reconsider if you want to push SEND. With that said – feel free to share, always with respect for others, how you feel or are reacting to what others are saying. The list host does read all list messages and reserves the right to moderate or remove individuals that cannot comply with the etiquette described above as the health of the list members as a whole take priority over any one individual.

RESTRICTED POSTING AND LIST MEMBERSHIP -The various discussion lists are these common sense rules are not respected the list host will contact you and ask for your cooperation. The list host can restrict your posting abilities and if there are still problems will revoke your list participation privileges completely. We prefer to take these severe measures, but will if necessary. 

Above all - share openly, warmly and often while always respecting the privacy and emotions of the rest of the CADASIL Family!

 Revised: April 11, 2008

CADASIL Together We Have Hope Non Profit Organization
3605 Monument Drive
Round Rock, Texas 78681
info@cadasilfoundation.org
 1 – 877-519-HOPE    
All rights reserved. 
Copyright © 2008