The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) has its roots in a support group of 21 members established in 1994 in Washington, DC by Arnold Smokler. In 1995, he was sending a newsletter to 125 patients under the name WMSG - Waldenstrom's Macroglobulinemia Support Group, and in 1996, the IRS recognized the WMSG with 501(c)(3) status.
Two years later (in 1998), a more formalized organization, the IWMF, was created, incorporated under the laws of the State of Florida, and was approved by the IRS under Section 501 (c)(3) of the Internal Revenue Code, with physical headquarters in Sarasota, Florida (USA).
The foundation was initially established for the purpose of offering educational information and caring support to Waldenstrom’s macroglobulinemia (WM) patients. Since the year 2000 we have funded research that will lead to better treatment therapies and, we hope, eventually a cure.
All activities of the Foundation are designed to support the following five objectives:
- To provide encouragement and support to WM patients, their families, and their caregivers.
- To provide a means for patients, families, and caregivers to communicate with others facing the challenges of the disease.
- To provide informational materials and educational programs about the basics of the disease and treatment options.
- To increase awareness of WM in the broader cancer arena and in the general public.
- To encourage and support research toward more effective treatments and ultimately a cure for WM.
The business of the Foundation is entrusted to a Board of fourteen volunteer Trustees whose term of office is three years. The Board of Trustees appoints the Foundation’s Officers. Our Board Advisor is Dr. Robert A. Kyle of the Mayo Clinic, who also serves as Trustee. The Board meets four times a year; an annual general meeting coincides with the Educational Forum, usually held in April.
The Board operates through standing committees and task forces for short-term projects and establishes ad hoc committees when necessary. The committees are chaired by Trustees and often benefit from the participation of patients and caregivers who offer their talents and time to various projects. Most committee work is accomplished through conference calls and e-mail.
In recent years we have expanded the international side of the IWMF, making contact with lymphoma organizations in all countries where there are WM patients who are IWMF members. Our focus is to raise awareness of the IWMF and the educational materials we offer in order to assist patients in other countries to understand their disease. We also held our first overseas forum for WM patients in Stockholm, Sweden, in October 2008, following the Fifth International Workshop on WM (IWWM5). Click here for more information on our next International Workshop: http://www.iwmf.com/physicians/workshops.aspx
Anyone can become a member of the IWMF – to learn how, please follow the link below:
Members of the IWMF receive our publications including booklets about different aspects of the disease WM, our quarterly newsletter theTorch, and periodic special bulletins. Members have access to a network of patients through IWMF-Talk (our Internet discussion list), through regional and local support groups, and through the telephone Lifeline. Participation in our annual Educational Forum provides members with the opportunity to hear prominent physicians and researchers present the latest information on our disease. The small-group breakout sessions at the Ed Forums, as they are popularly called, give members the chance to discuss issues important to them with other patients.
Information on IWMF websites, on IWMF-Talk, and in Foundation publications is provided to educate and assist patients, their families, and health care providers regarding health care strategies, medical and mental health treatment, and management of 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, IWMF-Talk 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 the treatment of WM. We discourage the use by a patient of any of the 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 in an uncritical manner 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.
In addition, 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 you to research further and extensively into those areas of medicine and care that relate 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. Since WM is an extremely rare disease, information about it can be conflicting and is constantly changing. 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. The Foundation takes no official stand on medical matters.
The IWMF is not responsible for, or liable to, any person, agency, or entity for any misrepresentation, claim, injury, harm, or damage, be it 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, the wonderful members of the telephone Lifeline, our generous contributors and financial supporters, the legion of volunteers who support and operate all of our communications and support systems, and our office staff–all are dedicated to helping patients and their families and to pursuing the search for an ultimate cure. We take our mission seriously, and we encourage your support and assistance in any way you can provide.