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The
RFW is pleased to have been able to supply the seed money to make possible
the Second International Workshop on Waldenstrom's held in Athens, Greece
from September 26-30, 2002. Fifty physician scientists with outstanding
expertise in WM participated in the meeting.
Use the links below to read the conference Welcome Address from RFW executive
director Anne Mann and the final reports of the four consensus panels.
- Welcome
Address
- Report from Consensus Panel One
- Report from Consensus Panel Two
- Report from Consensus Panel Three
- Report from Consensus Panel Four
Welcome
Address by Anne Mann, September 26, 2002
Doctors Kyle, Dimopoulis and Treon, distinguished consensus panel members,
researchers and guests: The Research Fund for Waldenstrom's takes great
pleasure in welcoming you to Athens for the 2nd International Workshop
on Waldenstrom's macroglobulinemia.
I also bring greetings from Arnie Smokler, who pioneered the first significant
support services for Waldenstrom's patients everywhere. Arnie merged all
of his Waldenstrom's operations into the Research Fund for Waldenstrom's
a year ago - - he agrees with us that only through research will we find
a cure. And, research is the primary focus of the RFW. By coincidence
this meeting is a most fitting tribute to Arnie who tomorrow celebrates
his 70th birthday, a day he thought he'd never see when he was diagnosed
with WM.
It seems especially fitting that this meeting is taking place in Greece,
in the shadows of the Acropolis where ancient philosophers and scholars
met to discuss difficult problems to arrive at a consensus of what was
truth. Hippocrates, the father of medicine, studied in Athens. The 60
texts of the Hippocratic Corpus were written at the culmination of the
Classical Period. Medicine was separated from superstition and the first
theories of disease were formulated. You are gathered here to discuss
and then set down the "Waldenstrom's Corpus" that is to be distributed
to physicians around the world as the standard for diagnosing and treating
our disease.
If someone had told me in October of 1996, when I was first diagnosed
with Waldenstrom's, that I would be addressing such a distinguished group,
I would have viewed him as certifiably insane. Little information was
available at that time and I soon learned that virtually no research was
being done. The reasons are not difficult to understand - - return on
investment is poor given the small numbers afflicted with WM, and government
funding is difficult to obtain since such small numbers do not constitute
a large voting bloc. Something had to be done and it became clear that
we had to help ourselves. I decided not to be a victim, but instead to
actively campaign for funds to find a cure.
We started with a walkathon with 10 people and raised $10,000. A year
later we raised over $40,000 through a similar event. At about that time,
in 1999, we heard Dr. Treon speak at a support-group meeting and learned
that as little as $30,000 could get a project started. We moved quickly
and made Dana Farber Cancer Institute the recipient of our fund-raising
activity, raised some $38,000, and in August of 1999 formed the Research
Fund for Waldenstrom's at the DFCI. The money was quickly put to use in
a clinical trial using Rituxan in the treatment of WM. Sixteen centers
took part in that trial - some of those partner investigators are gathered
here in this room. Finally we had something positive to report on.
September of 2000 saw us take on a bigger challenge - the Jimmy Fund Walk
in Boston. Some of us walked the entire 26.2-mile route of the Boston
Marathon as Team Waldenstrom's. We were a bit weary at the conclusion
but were rewarded with great press coverage and a final tally of $68,000.
We answered Dr. Treon's plea and made available the moneys to fund the
first Waldenstrom's Symposium at the International Myeloma meeting in
Banff in May 2001. It was immensely successful in the numbers of physicians
and researchers who attended and received our grant applications.
We established the Research Fund for Waldenstrom's Award for outstanding
efforts in WM research, presented it to Dr. Robert Kyle, and announced
that henceforth it would be presented by the RFW as the Robert Kyle Award
for excellence in WM research. We will present this award biennially at
the International Myeloma meeting. Most importantly, before we left Banff
we met with Drs. Dimopoulis and Treon, and at their request committed
the seed money to make the Athens meeting possible.
Recognizing the needs for funding outside of Dana Farber, the Research
Fund for Waldenstrom's, Ltd was born as a separate entity in August of
2001. With the help of Arnie Smokler and his Waldenstrom's Cancer Fund,
we awarded the first Smokler Research grants in 2002 - - ALL of our grants
are named in tribute to Arnie. We are proud to have our first recipients
- - Drs. Gwen Nichols and Cy Stein of Columbia University, Drs. Linda
Pilarski and Andrew Belch of the University of Alberta and Dr. Surinder
Sahota of the University of Southampton - - report on their work here
in Athens. Our grant applications are available at the registration desk
and on our website www.waldenstromsresearch.org. Our application deadline
for 2003 Smokler Research Grants is now October 15, 2003. So you still
have ample time to forward an application to us.
September 28, 2001 saw 43 Waldenstrom's patients, family and friends step
off at the Jimmy Fund Walk to raise over $76,000 for the fund at DFCI.
Our daughter, Melinda, bicycled 190 miles to raise another $15,000. Bob
Lynch rowed over 190 miles to raise funds for our new fund. Mark Riopelle
and family and friends, walked at another venue to raise funds, and a
number of foundations saw what we were doing and awarded us grants.
This Sunday some 63 walkers, joined by the families and friends of Dolores
Hermsdorf and Pat Stayn, will step off to raise even more money for research
through Team Waldenstrom's. Regulars among our walkers for Team Waldenstrom's
have been Dr. Steven Treon and his children. The researcher and the patients
have become a family working together for a common goal.
I represent two organizations here: the Research Fund for Waldenstrom's
at DFCI and the Research Fund for Waldenstrom's, Ltd. Each fund stands
alone. Together we have funded over $500, 000 in research to date. Our
narrow focus is on funding research, and in order to search for projects
we attend venues like this to create awareness. In addition to Banff,
we also funded the 8th International Conference on Malignant Lymphoma
in Lugano where we attracted over 1800 attendees. We thank Dr. Franco
Cavalli for his efforts. For the first time our name and WM abstracts
were printed in the Annals of Oncology.
Additionally, we funded the largest-ever Patient and Physician's Summit
in Boston in November of 2001. We are especially pleased to announce tonight
that the Research Fund for Waldenstrom's will be funding the Second Patient
and Physician's summit at the Johnsson Cancer Center of the University
of California in Los Angeles, November 7 through 10, 2003 under the able
guidance of Dr. Christos Emmanouilides. Dr. Emmanouilides has participated
in many of our clinical trials.
It is very satisfying to stand here and see before me the people who gave
me a second opinion in 1996, the people who treated me in 1999 and the
many people whose research we have funded over the last three years. By
working together we can make significant strides in finding a cure or
at least some reasonable partial remissions.
We look forward to seeing you again in Salamanca in the spring of 2003
where we will present our Robert Kyle Award for significant accomplishments
in WM research. Any one of you in attendance here could be a recipient
of that award.
May the culmination of your efforts here produce a "Corpus Waldenstrom's"
that will act as a guide for physicians who treat our disease around the
globe. Arnie Smokler and the RFW thank you for your valuable time and
talents. A thank-you also to Genentech BioOncology, Berlex Oncology, IDEC
Pharmaceuticals, Celgene Corporation and the Peter and Helen Bing Fund
for supporting this workshop with additional funding.
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