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History of the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) The IWMF began in 1994 when Arnold Smokler, a retired pharmacist, was diagnosed with WM. Finding little available information and no organized support groups, he formed the Waldenstrom's Macroglobulinemia Support Group (WMSG). The organization gradually grew and in 1998 was incorporated in the State of Florida under its new name, International Waldenstrom's Macroglobulinemia Foundation, as a non-profit corporation. The organization has continued to grow with supporters including patients, caregivers, medical professionals, and friends throughout the U.S., Canada, Europe and, increasingly, patients and supporters from many other countries. Purpose and Vision
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Membership Any interested person may become a member of the International Waldenstrom's Macroglobulinemia Foundation. Simply send notice of your desire to become a member, together with any size of annual contribution you wish to make toward our work to our office at 3932D Swift Road, Sarasota, FL 34231. You may also join online via credit card by completing the online membership form. Contributions are, of course, tax-deductible. Voting membership is a privilege given to any member who is a WM patient and may be exercised either by the patient or by his/her designated proxy. Members receive our publications, including our quarterly newsletter, the IWMF Torch and periodical bulletins, have access to personal contacts through our Internet Talklist, regional support groups, and Telephone Lifeline Project, and may participate in our annual Educational Forum, where they hear from prominent researchers and other interesting speakers and trade experiences with one another. Organization The business of the Foundation is entrusted to a board of Trustees from which the Officers are appointed. The IWMF is incorporated under the laws of the State of Florida and is tax-deductible under Section 501(c)(3) of the Internal Revenue Code, with Federal ID # 54-1784426. IWMF Officers: Judith May, President Roy Parker, Vice President for Administration, International Committee Jim Berg, Secretary and Special Projects Writer/Editor IWMF Trustees: Arlene Hinchcliffe, Support Group Leader Coordinator; Fund Raising Committee Oakville, Ontario, Canada, wmfc@noco.ca Elinor Howenstine, Fund Raising Committee; Outreach Coordinator Robert A. Kyle, M.D., SAC Chair; Board Advisor Don Lindemann, Torch Editor Dave Lively, Chair, Fund Raising Committee Richard Weiland, Fund Raising Committee David Agus, M.D., Cedars-Sinai Medical Center, Los Angeles, California Bart Barlogie, M.D., University of Arkansas, Arkansas Morton Coleman, M.D., New York Presbyterian Hospital, New York Meletios Dimopoulos, M.D., School of Medicine, University of Athens, Greece Christos Emmanouilides, M.D., Interbalkan European Medical Center, Greece Stanley Frankel, M.D., Hoffman-LaRoche, Nutley, New Jersey Morie Gertz, M.D., Mayo Clinic, Rochester, Minnesota Robert Kyle, M.D., Mayo Clinic, Rochester, Minnesota Véronique Leblond, M.D., Hôpital Pitié Salpêtrière, France James Mason, M.D., Scripps Clinic, La Jolla, California Gwen L. Nichols, M.D., Hoffman-LaRoche, Nutley, New Jersey Steven Treon, M.D., Dana Farber Cancer Institute, Boston, Massachusetts Mary Varterasian, M.D., i3 Drug Safety, Ann Arbor, Michigan Donna Weber, M.D., M.D. Anderson Cancer Center, Houston, Texas
Financial Statement Click here to view financial statements for 2007. Privacy Statement The IWMF is a non-profit, non-commercial Foundation engaged in activities as described above and elsewhere on this website. This Privacy Statement covers all internet communication systems of the foundation including our TalkList for medical information exchange (IWMF-Talk). This Statement does not cover private email exchanges over which the Foundation has no control. The IWMF does not sell, rent, exchange, or otherwise disclose membership or mailing lists to any other entity. Patient confidentiality is strictly enforced. Disclaimer Information on IWMF websites and TalkLists and in Foundation publications are provided to educate and assist patients and their families and health care providers regarding health care strategies, medical and mental health treatment, and in dealing with a difficult and incurable rare lymphoma. No patient should ever depend on self-diagnosis or self-treatment of any major illness, especially a rare and difficult lymphoma such as Waldenstrom’s macroglobulinemia. We urge our website visitors, TalkList members, and readers of IWMF publications to use the information provided in full consultation and under the care of a professional medical specialist with experience in treatment of WM. We discourage the use of any of information contained in these locations for self-treatment without disclosure to the medical specialists treating their disease and related ailments. Equally, the information contained in our sponsored Internet locations and publications should never be used uncritically by any health care provider or facility. Medical professionals and facilities are not relieved of responsibilities to research the most recent literature available to determine if a drug or treatment protocol is appropriate for their Waldenstrom’s patients. Further, please recognize that the information included in IWMF Internet locations and publications is limited and cannot cover all information available on the causes, diagnosis, prognosis, and treatment of WM. We encourage your extensive research into those areas of medicine and care relating to your specific conditions. The IWMF does not endorse or recommend any specific treatment, protocol, chemotherapeutic drug, pharmaceutical company, clinic or agency, physician or specialist, insurance company, hospital, or any other person or institution for treatment of WM. As an extremely rare disease, information on WM is controversial and is constantly changing, and we are all still learning. Any representations by officers, trustees, or staff of the IWMF as to appropriate care or referrals of any kind are to be taken as statements by individuals, and not as formal or official positions of the Foundation, which takes no official stand on medical matters. The International Waldenstrom’s Macroglobulinemia Foundation is not responsible for, or liable to, any person, agency, or entity for any misrepresentation, claim, injury, harm, or damage, physical or psychological, arising out of the use of, or reliance on, internet communication systems or publications provided by the Foundation. By your use of these sites for information and communication, you hereby relieve the Foundation of any liability or responsibility of any kind for the content provided and any consequences for use of such. Beyond the Disclaimer, we want you to know that all of us connected with the IWMF, the officers and trustees, our scientific advisors and medical researchers, the support group leaders, and the wonderful members of the Telephone Lifeline, our generous contributors and financial supporters, and the legion of volunteers who support and operate all of our communications and support systems are dedicated to helping patients and their families and to the search for an ultimate cure. We take our mission seriously, and we encourage your support and assistance in any way you can provide. To Contact the Foundation:
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