International Waldenstrom’s Macroglobulinemia Foundation



Happy 2020 everyone!
The first year of a new decade! It’s hard to believe that 20 years have passed since Y2K—it seems like yesterday! But new decades bring new research and discoveries in science and medicine, and we can all appreciate what that might mean for our journeys with Waldenstrom’s macroglobulinemia.
For those who are on “watch and wait,” our cover story will be of particular interest. Dr. Irene Ghobrial, Annie Cowan, Dr. Catherine Marinac, and Nader Shayegh, of Dana-Farber Cancer Institute, discuss the diagnosis of the premalignant conditions of IgM monoclonal gammopathy of undetermined significance (MGUS) and smoldering WM (SWM). Defining these conditions, examining how and why progression might occur, and considering questions of early treatment is covered in detail in this very useful article.
Many will also relate to Linda Pochmerski’s “Torch ‘Toon” of the conundrum facing those who are trying to determine which treatment to have. So many aspects of a treatment have to be weighed and considered, and it can seem overwhelming.
Chairman of the IWMF Board Carl Harrington discusses the vision, mission, and compelling intentions with which the IWMF formally operates, and Chief Development Officer Newton Guerin further elaborates on how the IWMF mission will be funded in 2020 and beyond.
The Doc Star spotlight in this issue is focused on Dr. Asher Chanan-Khan at the Mayo Clinic Jacksonville, FL. It includes the interesting story of his involvement in one of the only cell lines that was directly developed from patient WM cells without the need of transfection with a retrovirus. Like me, you’ll probably need to read the article to understand that last sentence!
Bonnie Beckett’s “From Patient to Patient Advocate” takes a look at the politics behind advocating for rare disease policies on Capitol Hill. It’s a fascinating account of the behind-the-scenes work by patients and their supporters to help bring their concerns to the attention of our lawmakers. We can all learn to be proactive about this by contacting our elected officials.
A special feature of Sue Herms’ “Medical News Roundup” in this issue is her summaries of selected abstracts on clinical trial results and survival trends from the American Society of Hematology meeting, held December 5-7. Dr. Jacob Weintraub’s summaries by subject of discussions on IWMF Connect cover many issues and offer many links to relevant articles that help WMers deals with problems they may face on a daily basis.
Penni Wisner extols the benefits and goodness of kale in her “Cooks’ Happy Hour,” and her listing of the activities of our domestic support groups gives us a good idea of how useful they are to WMers. The IWMF’s international affiliates are equally busy and Annette Aburdine’s coverage of them gives us an idea of their involvement in WM education for their members.
So enjoy all the news you’ll find in this first issue of the new year, and have a very happy and healthy 2020!
In Memoriam
 As this issue was going to press, we learned of the passing of Alice Riginos, the well-known and respected editor of the IWMF Torch from 2008 to 2018. She brought to life her vision of a magazine that is both beautiful and extremely useful to WMers around the world. We will cover Alice’s legacy to the IWMF in the April issue. We send our sincere condolences to her family and friends.
Shirley Ganse
Editor, IWMF Torch
Click HERE to check out the January Torch!


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