The purpose of the WMFC is to provide information, resources, a communications network, and experience on how to live with WM, plus encouragement to those affected by this rare and (presently) incurable blood cancer. The WMFC is a non-profit, all-volunteer organization, developed and financed almost entirely by patients and their friends and families. As well as providing information to WM patients and care-givers, it funds important research into this orphan disease — research that can help improve available treatments and that may some day lead to a cure.
If you are not already familiar with it, you should check out the excellent resources at our organization’s parent site, the IWMF website. This is a public website available to everyone. There you will find information about WM and its treatment. After diagnosis with WM, we often feel alone and afraid. By joining our focused interest, commitment and energy together, we can make a dramatic difference in each other’s daily lives. We can help each other learn more about this disease by sharing our symptoms and treatment results. We can learn how to take control of our treatment decisions. We can seek recognition and attention from government agencies, and more importantly, we can sponsor research towards an ultimate cure.
In addition to its public website information, the IWMF also publishes, for its members, a newlsetter (The Torch) and operates the valuable on-line IWMF-Talk list.
-If you are a member, you can join the IWMF-TALK list by:
- sending an email to firstname.lastname@example.org
- typing the word “subscribe” in the subject area and leaving the message area blank
- you will receive an email from IWMF-TALK asking you to confirm your request
- click on the link provided in the email
- once you’re received the welcoming messages back, you are free to send your own messages to the IWMF-TALK list by addressing your emails to email@example.com
- these instructions are more fully set out on the IWMF-TALK list page
-when you send a posting to the IWMF talklist, it is automatically distributed by email to all IWMF talklist subscribers
-so you can ask questions and receive (or give answers) and we all learn from each others’ experiences
-furthermore, you can search the archives of the talklist for a particular WM-related subject of interest to you
-by the way, there are other related talk lists available too
-although the IWMF used to run an IWMFCAM talklist (on complementary and alternative medicine) it does so no longer
-but an alternative CAM talklist can be found in Yahoo groups and was mentioned by the late Jerry Berman (of the Toronto WM Support Group)
- simply go to the Yahoo WMCam site
- click on “join this group” at the right
- go through the indicated procedures of signing up for a Yahoo ID and then request to join the WMCam group
- (I have no particular experience with this talklist as yet but it has some 97 members and it covers “Complementary and Alternative Medicine (CAM) Issues for Waldenstrom’s Macroglobulinemia patients and caregivers”)