Last updated: Feb 13, 2010
If you have been diagnosed with Waldenstrom's Macroglobulinemia, or care about someone who has, welcome to the IWMF family of WM patients, caregivers, friends and relatives. The page you are on is the home page for WMF Canada, which serves as the Canadian chapter of the International Waldenstrom's Macroglobulinemia Foundation (IWMF). If you are already an IWMF member, you know all about the IWMF resources and can skip to section 2 below. If not, you should first read section 1 below about the IWMF.
You may simply read the whole page, scrolling down. Or, alternatively, you can use the contents listed below to jump immediately to the section you want.
The purpose of the IWMF 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 IWMF 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 strange disease -- research that can help improve available treatments and that may some day lead to a cure. The IWMF contains members from around the world -- including many in Canada.
If you are not already familiar with it, you should check out the excellent resources provided at 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.
The purpose of WMF Canada is to operate as a sort of "Canadian chapter" of the IWMF. If you are a Canadian and have WM, or are a caregiver, friend, or relative of a WMer, or are an interested member of the Canadian medical community, we would welcome you as a member of WMF Canada. Members of WMF Canada automatically become members as well of the IWMF. WMF Canada was incorporated under Canadian legislation in early 2002. It qualifies for tax-exempt status as a registered charity (designated as a Charitable Organization) under the Income Tax Act and obtained its registration effective Dec 27, 2002. It can issue tax receipts for voluntary contributions that will be deductible for income tax purposes by Canadian taxpayers. It will in turn support WM research, just as the IWMF does.
Its address is:
Waldenstrom's Macroglobulinemia Foundation of Canada,
260 Dalewood Dr.,
Oakville, ON L6J 4P3
But it is not just the Canadian tax deductibility that is the reason for the WMF Canada's existence. WMF Canada is also a vehicle for sharing experience among Canadian WMers and Canadian WM support groups. Currently there are six Canadian WM support groups:
This WMF Canada website is not intended to duplicate the excellent resources at the IWMF website. Therefore:
As a starting position, back in the summer of 2003 all then current Canadian members of the IWMF were deemed to be automatically members of the WMF Canada. Thereafter, Canadian members annually take out or renew memberships in WMF Canada and all WMF Canada members are automatically members of the IWMF as well (and entitled to the newsletter Torch and the various talklists). Each fall a membership letter is mailed out inviting members to renew their memberships and fill out a voluntary contribution form (see below) and return it to WMF Canada at the above Oakville address.
For further details of WMF Canada's fiscal procedures and its board and officers, see the WMF Canada Corporate Page.
Back to topWe thank our Canadian members for your continued support to our membership and research funds for the IWMF through the WMFC. All Canadian donations should be made directly to the WMFC for a tax receipt. Any donations sent to the IWMF will be forwarded to the WMFC for processing unless otherwise noted.
When possible, Canadian contributions to our research fund are directed to research projects in Canada that have been approved by the IWMF Scientific Advisory Committee.
The WMFC has In Memory and In Honour donation cards which can be obtained by contacting Arlene Hinchcliffe at wmfc@noco.ca or 905-337-2455. Donation forms for membership, In Memory, and In Honour can be accessed at this website (see below).
Back to topThe following are people you may feel free to contact if you have any questions about situations or treatments you are facing and that they have been through.
The voluntary contribution categories are:
In addition to regular annual contributions, it is possible to make two types of special contribution: one in honour of someone and one in memory of someone. Again, to do so, please download, print out, and send in the appropriate contribution form:
Back in 2003 and 2004 we ran a protected portion of this website as an initial experiment in sharing information privately among members of Canadian WM support groups (initially the trial project was solely with members of the Toronto Support Group). The purpose was to permit members, who might have been sitting across the table from each other during support group meetings, to check out the WM and treatment experience of their colleagues in an informal and confidential manner. This section of the website was private and password-protected so any information which members voluntarily decided to share with each other would not be accessible to the public at large. Furthermore, members concerned about privacy also had the option, if they wished, of recording their information under a pseudonym.
The purpose of this information-sharing was not scientific data-gathering but rather more personal and anecdotal -- so that you could say, 'oh yes, I see, Fred had no problem with side effects from his chlorambucil but it took a long time showing whether it was having a definite effect -- but eventually it did and he's very pleased' -- that sort of thing.
However, the response to this experimental invitation to share information was minimal and the experiment has now been discontinued. There's no right or wrong in these matters. If members find that a combination of support group meetings and IWMF talklist exchanges adequately serves their needs, then that's fine. Just in case this issue is ever re-considered in the future, there are provided below two illustrative links (in this case, not password-protected) of how this sort of shared information would look.
Our domain name is WMFC.ca -- so our full web address is http://www.WMFC.ca (the page you are now looking at).
From this page you can access additional information such as the WMF Canada Corporate Page and, in the future, perhaps further material.
Back to topThe WMFC/IWMF was formed to provide information and educate those who are living with Waldenstrom's Macroglobulinemia. It is intended to keep patients and other interested individuals informed of ongoing research and new treatments, with the ultimate goal of finding a cure for this rare cancer in addition to providing support. At this time there is no protocol for the treatment of Waldenstrom's Macroglobulinemia and each person may respond to treatment differently. No individual should embark upon any course of medical treatment that is described in our communications without first consulting with his or her physician. The WMFC/IWMF is not responsible for the medical care or treatment of any individual.
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Please send any comments for improvement of this website to your webmaster (Rod Anderson) by email at rod@rodmer.com or by phone (905) 372-2410.