IWMF-Talk (Internet Discussion Forum)

QUICK LINKS: Download PDF Instruction Guides:
     1. How to subscribe to IWMF-TALK
     2. How to use the IWMF-TALK Archives
     3. How to manage your IWMF-Talk Subscription

The IWMF operates an Internet-based Discussion Forum called IWMF-Talk. Members post their message or question to the TalkList. The message is automatically distributed to all the members on the list by email within minutes, or when the systems are busy, within hours. Members can reply to the individual poster or to the entire list. There are typically 20-30 messages per day, all on topics directly related to Waldenstrom’s macroglobulinemia.

People are often reluctant to join Internet talk groups because of exposure to computer viruses and worms and because they do not want their email addresses used by spammers, slammers, and other nefarious marketers. We very closely monitor and control our lists, prevent contamination by not allowing attachments, and never, ever allow any person or organization access to our lists of email addresses.

Because of this protection policy, you must subscribe in order to receive or write to IWMF-Talk. You may use any email address you wish, and you may communicate with any name, real or fictitious, but you must use your real name to subscribe. Your real name is protected and not revealed by us. However, this community is so sharing and caring, and there have been so few concerns, that most of us use our real names. It’s your choice.

IWMF-Talk:

IWMF-Talk has been in operation for several years. The focus is specifically on diagnosis, distinction, treatments, research, prognosis, side-effects and related conditions specific to WM, and some important information about patient advocacy, outreach to doctors and the newly diagnosed, the foundation and its research programs, forums, and educational activities.

We do have some rules (eek!) that we ask you to read and follow:

1. Postings should be responsible. Names are required and anonymous postings are not allowed.

2. Please keep messages short and related to WM, diagnosis, treatment, results, tests, or IWMF organization discussion.

3. Be careful with your posting. Everyone will read what you write here. If your message is personal, be sure to send it to one person. (Click "Reply" to respond to one person, "Reply-to-All" to reply to the whole group.).

4. If you reply to IWMF-Talk, only 3-4 lines of the message you are responding to will be repeated. This is on purpose, to prevent clutter.

5. Blank subject-line or blank body messages will be rejected.

6. Clean your messages up: use your spell checker; if you copy long reports or research, remove all the headers and garbage.

7. Remember your playground rules: play nice, respect others, share. If you don't have something nice to say, just be quiet. We use our TalkList to learn and support each other and it has been a great source of help to our members. We realize that on occasion disagreements about treatments or ideas may occur, but we must avoid personalizing them or attacking any person or group. That would be completely contrary to our goals.

Please feel free to contact us with questions about IWMF-Talk or if you experience any problems. Our IWMF-Talk contact is Pete Denardis at pdenardis@comcast.net.

REMEMBER: YOU MUST GO IN UNDER THE ADDRESS AT WHICH YOU RECEIVE YOUR MAIL. You can not change your email address before you go into your setting. For example: JohnDoe@attibi cannot get in as JohnDoe@worldnet.com. The system cannot recognize that address.

Tips to help handle the avalanche of messages that can clog your inbox:

1. Set up a folder to automatically collect all messages from IWMF-Talk. This can be done with either Netscape Navigator or MS Explorer. Check your "Help" file for instructions.

2. Another option is to subscribe to the Digest form of the list. This will collect all messages from the list and send you one long collection every day. The downside of this approach is that you only get messages every 24 hours, at midnight. For instructions on digest subscriptions, go to the IWMF-Talk website or contact us.

Welcome to IWMF-Talk!