IWMF Torch (quarterly newsletter)
The many activities of the IWMF are reported in the Torch, including updates on research initiatives sponsored by the Foundation, fundraising, Ed Forum programs, support group meetings, and lively discussions on IWMF-Talk. Recent issues have included articles about complementary medicine, staying well with cancer, side effects in WM, and reports of advances in research about hematological malignancies in general and about WM in particular.
E-Bulletins are sent to the membership via e-mail between quarterly Torch issues.
Held each spring at a different location, the Ed Forum features presentations by medical professionals who specialize in the study and research of WM. The presentations are directed specifically to the layperson and are not occasions when "specialists talk to specialists." The Ed Forum also offers breakout discussion groups on specific topics of interest to both patients and caregivers. Many of the medical professionals remain for the duration of the forum and are available to talk with attendees on an informal basis. Each Ed Forum concludes with the popular "Ask the Doctor," a question and answer session moderated by Dr. Robert Kyle.
Often the first point of contact a newly diagnosed patient has with the IWMF, our website was first developed in 2002 to implement the mission of the Foundation. From time to time, redesigns and enhancements will occur to the site to further advance the causes most dear to WM patients and caregivers. The visitor to the site, whether WM patient, a family member of a patient, or others with an interest in the disease, will locate services providing support and encouragement, will discover information about WM and educational programs, and will learn how research supported by the IWMF is making strides towards better treatments and a cure.
An e-mail talk list in English where all matters regarding WM are discussed among patients and caregivers. IWMF also administers an e-mail talk list in Spanish and another for our Nordic members. Click on the links below to initiate a subscription email:
Spanish subject: subscribe
Nordic subject: subscribe
An online database that contains the active medical history of participating WM patients, the database will serve as an ever-growing, evolving encyclopedic guide to the conditions and medical histories of WM patients. This project is currently under development.
A list of IWMF members in your area, the Network is a means of putting patients and caregivers in touch with others living nearby.
Lifeline is a list of patients and caregivers who volunteer to take phone calls and share their experiences regarding treatments, clinical trials, and other specialized areas pertaining to WM. For those who feel more comfortable speaking in their native language, there are also Lifeline members fluent in languages other than English.
The IWMF currently has over 40 support groups operating in the United States, 6 in Canada, and another 14 outside North America. Support groups are facilitated by volunteers in each area who have an interest in bringing WM patients and caregivers together periodically throughout the year. A common activity in all groups is sharing the personal history and medical experience of the members. Some groups may feature WM experts as speakers or offer other special programs.
Caregivers for family and friends diagnosed with WM may be called upon to provide a wide scope of services including, but not limited to, emotional support, personal care, and household responsibilities. Caregivers are welcome to participate in the IWMF support groups, the Lifeline, IWMF-Talk, and the annual Ed Forum, and they are encouraged to become knowledgeable about WM by reading the various publications and using the other services offered by the IWMF.
Booklets, publications, and information packages (Info Paks) are published by the IWMF to address many aspects of the disease and to provide the WM patient and caregiver with the information needed to confront the diagnosis of WM, to cope during therapy, and to emerge a survivor.
These publications include content that provides answers to basic questions about WM, that explains how to interpret various medical and blood tests, that outlines the intricacies of the immune system, and that discusses options when treatment is called for. Most of these publications are directed to laypersons, and they are revised continually as our knowledge of WM advances.
Our publications can be downloaded directly from our website. Several of our more popular ones are also included on CDs that are part of the Info Pak for New Members, the WMF Canada Info Pak, and the Info Pak for Physicians, Nurses, and Other Health Professionals, which are mailed upon request. Our publications are available by clicking here
IWMF members may also participate in e-mail discussion groups in French and German as well as in groups based in the U.K., Australia and New Zealand. Please see the IWMF-Talk section above for links to Spanish and Nordic country discussion groups.
Links to some other WM sites are also included below: