Fall 2007 - International Waldenstrom's Macroglobulinemia ...

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PAGE 2 OFFICERS & TRUSTEES FOUNDER Arnold Smokler PRESIDENT Judith May VICE PRESIDENTS James Bunton Tom Myers, Jr Guy Sherwood, M.D. SECRETARY James Berg BOARD OF TRUSTEES Arlene Hinchcliffe Elinor Howenstine Robert A. Kyle, M.D. Don Lindemann Dave Lively Roy Parker Karen Pindzola Richard Weiland Ronald Yee BUSINESS OFFICE Sara McKinnie, Office Manager Don Lindemann, Torch Editor IWMF SCIENTIFIC ADVISORY COMMITTEE David Agus, M.D. Cedars-Sinai Medical Center Bart Barlogie, M.D. University of Arkansas Morton Coleman, M.D. New York Presbyterian Hospital Meletios A. Dimopoulos, M.D. School of Medicine, University of Athens Christos Emmanouilides, M.D. Interbalkan European Medical Center Stanley Frankel, M.D. Merck & Co., Inc. Hoffmann-La Roche Morie Gertz, M.D. Mayo Clinic Robert A. Kyle, M.D. Mayo Clinic Veronique Leblond, M.D. Hopital Petie Salpetriere James Mason, M.D. Scripps Clinic Gwen Nichols, M.D. Hoffmann-La Roche Alan Saven, M.D. Scripps Clinic Steven Treon, M.D. Dana Farber Cancer Institute Mary Varterasian, M.D. i3Drug Safety Donna Weber, M.D. M.D. Anderson Cancer Center The conference attracted approximately 1,700 participants, with the first four days devoted to multiple myeloma (Monday through Thursday) and one evening and two days devoted to Waldenstrom’s macroglobulinemia. Since multiple myeloma is much more common than WM and has the interest of many more doctors and researchers, more sessions at the Kos Workshop were devoted to it than to WM. On Thursday evening a symposium on “Advances in the Biology and Therapy of Waldenstrom’s Macroglobulinemia” was attended by about 240 doctors and researchers. The sessions on Friday and Saturday, however, drew fewer participants. This edition of the Torch includes Part 1 of a scientific report of the Kos workshop provided by Dr. Guy Sherwood. President's Corner, cont on page 3 President Judith May Editor Don Lindemann Guest Editor (FaLL '07) Alice Riginos Medical News Editor Sue Herms PRESIDENT’S CORNER by Judith May The Fourth International Workshop on Waldenstrom’s Macroglobulinemia was held in late June on Kos Island, Greece. This workshop is held every other year in a different location to bring together the international researchers who have conducted research and clinical trials on our disease. The workshop provides a forum for sharing and discussion of new information, for forging a consensus on revisions to the current understanding of how WM is diagnosed and treated, and for reviewing responses to treatment. The IWMF Board members attending the conference were Tom Myers, VP for Research; Guy Sherwood, M.D., VP for Member Services; Robert Kyle, M.D., Director of IWMF’s Scientific Advisory Committee, and Judith May, President. This was the first time that the International Workshop on WM and a similar workshop on Multiple Myeloma were combined. The idea to combine the two workshops stemmed from the high cost and necessarily time-consuming fund raising efforts with pharmaceutical companies in order to find support for two separate workshops. The Board is now discussing whether we will continue to join the myeloma researchers or whether a separate workshop best serves the IWMF. The IWMF Torch is a publication of: International Waldenstrom’s Macroglobulinemia Foundation 3932D Swift Road • Sarasota, FL 34231-6541 Telephone 941-927-4963 • Fax 941-927-4467 E-mail: info@iwmf.com • Website: www.iwmf.com Senior Writers Jim Berg Guy Sherwood Support Group News Penni Wisner Talklist Correspondent Mitch Orfuss Layout Sara McKinnie IWMF is a 501(c)(3) tax exempt non-profit organization Fed ID #54-1784426. Waldenstrom's Macroglobulinemia is coded 273.3 in the International Classification of Diseases (ICD) of the World Health Organization.
President's Corner, cont from page 2 In the past the IWMF has always participated in the bi-annual International Multiple Myeloma Workshop by having a booth at the conference to answer questions and distribute our literature. This has proven to be a successful way to interest new researchers in applying for grants, and it is also a good way to add doctors and researchers to our mailing list and to provide them with information on our disease. Often doctors are willing to have IWMF publications sent to their offices and clinics for patient use. At previous multiple myeloma workshops we met doctors and scientists from Greece, China, India, and France who were interested and willing to work with us to develop new support groups in these countries. The booth provided a great opportunity to meet many medical professionals who often told us how impressed they were with our booklets and leaflets, many of which have been translated into other languages. (Currently publications are available in Spanish, French and German, and we are looking into further translations into Greek and Chinese) * * * A separate conference is being planned with our National Cancer Institute contact, Dr. Richard Little. This would be a one- or two-day think tank meeting of researchers to sort out the future direction for WM research and to specify where the IWMF Research Funds could have the most impact. Planning for this conference is yet in the developmental stage, and more will be announced when we have the details confirmed. * * * For all those with peripheral neuropathy, there will be a free telephone education workshop for people living with cancer, their families, friends, and health care professionals. CancerCare is the sponsor of this workshop, which will be held on Tuesday, October 30, from 1:30 – 2:30 p.m. Eastern Time. You must register in advance and can do so by calling 1-800- 813-HOPE [4673], or register online at www.cancercare.org. * * * The National Cancer Institute reports two newsworthy items from the Centers for Medicare and Medicaid Services concerning premiums for Medicare Part D and a tip sheet for Medicare drug coverage. Due in large part to strong competitive bidding by health and prescription drug plans and beneficiaries’ choices, the Centers for Medicare & Medicaid Services (CMS) anticipates that the actual average premium paid by beneficiaries for standard Part D coverage in 2008 will be roughly $25. This is nearly 40 percent lower than originally projected when the benefit was established in 2003 and also lower than projected earlier this year. A new partner tip sheet, Information Partners can Use: Medicare Drug Coverage under Medicare Part A, Part B and Part D, has been developed to provide an overview on the drugs covered within each of the Medicare program components. This tip sheet helps clarify drug coverage for providers and partners assisting beneficiaries with chronic diseases and drug coverage enrollment. For more information on the above items, go to www.cms.hhs.gov. * * * The IWMF has a new Vice President for Administration. IWMF Trustee Roy Parker will be taking on the job, relieving Jim Bunton, our current V.P. for Administration and also IWMF Treasurer, of this responsibility to focus solely on his duties as Treasurer. The Vice President for Administration has an internal role as overseer of the functions and staff at our headquarters in Sarasota, Florida. We are fortunate to have Roy in this position, and certainly his background in business will be helpful. Roy will also continue as Chair of the International Committee. In closing, I would like to remind you of our ever-constant need for your support through IWMF membership dues assuring continued member services and through contributions to the IWMF Research Fund to underwrite research studies on our disease. Stay Well, Judith WHAT IS FLOW CYTOMETRY? by Sue Herms One of the most frequent uses of flow cytometry in medical diagnosis is to distinguish among the various types of leukemias and lymphomas. Flow cytometry may be particularly helpful in cases where analysis of cancer cells under the microscope is not adequate to determine the specific type of tumor present. The modern flow cytometer consists of a light source, collection optics, electronics, and a computer to translate signals to data. In most modern flow cytometers, the light source of choice is a laser that emits light at a specified wavelength. Scattered and emitted light is collected by two detector lenses (one set in front of the light source and one set at right angles). In the diagnosis of leukemias and lymphomas, usually a portion of the bone marrow or other tissue, such as a lymph node, is broken up into single cells and placed in a liquid— the cells in the liquid then flow through a chamber, one at a time very quickly, up to several thousand cells per second. At this point, the laser beam hits the cells as they pass. The way the laser beam light bounces (scatters) off each cell is What is, cont on page 20 PAGE 3
Page 1: iwmf torch Fall 2007 INTERNATIONAL
Page 5 and 6: Medical News, cont from page 4 in i
Page 7 and 8: Research Clinical Highlights, cont
Page 9 and 10: More Funds, More Research, cont fro
Page 11 and 12: FROM IWMF-TALK by Mitch Orfuss Over
Page 13 and 14: NEW ENGLAND (cont.) Western MA, VT
Page 15 and 16: Support Group News, cont from page
Page 17 and 18: SOCIAL SECURITY DISABILITY Howard P
Page 19 and 20: In memory of Harold Zfaney (cont.):

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