Did you know?

The IWMF raised more than five million dollars for WM medical research

Did you know?

The IWMF raised more than 60 support groups in North America and nearly 20 others world-wide

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The IWMF has a current worldwide membership of nearly 4,000

Did you know?

IWMF-TALK is a wonderful place to share information and learn from other survivors

Did you know?

Each year 1,500 new cases of Waldenstrom's macroglobulinemia are diagnosed in the USA

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Volunteers at the IWMF Telephone Lifeline are waiting to share their experiences with you

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You can order DVD recordings of past WM Educational Forums online or by mail

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All IWMF programs and services are funded by WM survivors, caregivers, friends, and family

IWMF News and Events

  • IWMF Research Projects - WM Tissue Bank Update & Revised Instructions

    2.5.2013 - 8.31.2014

    Dr. Ghobrial and her team have updated  and refined the forms, information, and processes involved for the IWMF-funded research tissue bank reseach study...and we can all participate (and encourage our family and friends to participate also):


    Ghobrial, Irene, MD – Dana-Farber Cancer Institute, Boston, MA. (Project Period 9/01/10-8/31/14). $900,000. TITLE: “Large Scale Genomic and Proteomic Profiling in Waldenstrom’s Macroglobulinemia”

    [A study to develop a tissue bank of WM specimens linked to clinical characteristics of patients in different stages of the disease; to characterize the genetics and proteonomics of WM cells during disease progression; and to develop biomarkers that evaluate in vivo activity of therapeutic agents in WM patients treated in clinical trials.]

    Important Note from Tom Myers, Vice President for Research, IWMF

    Tissue banking is a strategy for collecting samples of normal and cancerous tissue from patients, along with epidemiologic information about their disease, their lifestyle, and their genetic background. This material is stored in a secure place in such a way that the tissue samples and questionnaire data can not be identified with particular patients, in other words, anonymous. This material is made available to qualified researchers so that links among tumor type, treatment history, lifetime exposure to carcinogen,s and genetic background can be explored by many different researchers on the road to developing a cure. Tissue banks have made important contributions to research on many major diseases, and we are now attempting to create such a research tool for WM.

    Dr. Irene Ghobrial of the Dana Farber Cancer Institute has applied for and received a grant to create a tissue bank for WM and make it available to IWMF research grantees and other researchers. When the tissue bank is complete, she also hopes to use it to study the microscopic effect on the tumor cells of the various treatments that WMers use in order to link the effect on the tumor cells with the overall efficacy of the treatment. This will help us better to select treatments that are most effective against the patients’ actual tumors.

    I would urge you to consider participating in this research trial. All that is required is an initial blood and buccal cell (cheek scraping) sample and samples of tissue from bone marrow biopsies WHEN THEY ARE DONE AS PART OF YOUR NORMAL TREATMENT. No additional bone marrow biopsies are required from participants, aside from those required by your oncologist.

    Please check out the instructions and forms provided by Dr. Ghobrial and consider joining many of us to make this WM Tissue Bank a successful tool for research.



    To participate in IWMF's Tissue Bank Project, click here.