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Welcome to our web site! We hope that you
will find it user friendly and that you will visit regularly.
I am proud to be one of fourteen dedicated
trustees, all of whom work hard to achieve two major objectives.
Our first objective is support and education
for patients, caregivers and their families. We remember quite
clearly what it feels like
to be given the news that we have an incurable cancer with
an almost unpronounceable name. We remember the helpless, hopeless
feeling all too well. We also remember the relief in finding
an organization with over 3,800 patient and caregiver members
who have joined together to provide mutual support and caring
and support the search for a cure. It’s encouraging to
see many of those living rich, fulfilling lives and know that
they are happy to share their experiences with those newly
diagnosed and their loved ones.
This web site is but one way of offering
support. Other ways include our newsletter, the IWMF Torch, the
e-mail Talk-list,
with over 700 members, our support groups scattered throughout
the United States, with chapters in Australia, Canada, the United
Kingdom, Sweden, Norway and The Netherlands. Our annual Educational
Forum brings patients and caregivers together with some of the
world's finest physicians, researchers and other experts for
a three-day weekend of presentations, along with sharing in breakout
groups, and social activities.
Our second major objective is promoting and
funding research that will lead to improved treatment to make
it possible for
us to live fully with this disease while at the same time waiting
for the cure, which, although still a dream, is inevitable. We
are now well on our way, having raised over $2,000,000 in research
funds which has supported numerous research projects at prestigious
cancer clinics and institutions in the U.S. and abroad.
Waldenstrom's macroglobulinemia is considered
an "orphan
disease," so-called because it is extremely rare and therefore
receives little attention from pharmaceutical companies, researchers,
and the federal government, whose focus is more often on the
more common cancers. It is up to us to maintain organized efforts
to keep this disease in the minds of those who fund and direct
blood cancer research. Together we can make the wheel squeak,
and we can assure that it gets the grease.
Thank you for visiting. We hope that you
will click on "How
to Join" and contribute your energy and resources to our
efforts. Together, with the power of many, we can make a difference,
we can help each other, and we can find a cure.
Judith May
President,
IWMF
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