News

On Wednesday, October 4th, 2017 from 1:30PM – 2:30PM EST, Dr. Jorge Castillo of Dana-Farber Cancer Institute and Dr. Jeffrey Matous of Colorado Blood Cancer Institute will convene an online discussion on“What’s New in the Treatment of Waldenstrom’s Macroglobulinemia...

The 2017 IWMF Educational Forum proved to be a huge success, with the largest attendance ever for the event. It was great seeing so many patients, caregivers, researchers, and health care professionals gathered together in one place to share stories about living with...

The IWMF Board of Trustees has approved a record $2,200,000 in new research support, including the following new research projects from the IWMF-Leukemia & Lymphoma Society (LLS) Strategic Research Roadmap Initiative: 1. Dr. Bruno Paiva and Dr. Jose Angel Martinez...

At the 2017 IWMF Educational Forum, attendees had the opportunity to share stories about their individual cancer journey, learn how to best manage life with WM, and hear the latest news about exciting research advances direct from top investigators and clinicians....

Jun 1, 2017 The 2018 IWMF Educational Forum will take place in the Chicago area at the Westin O’Hare(link is external) from May 18-20, 2018. Mark your calendars now for this event! The IWMF’s annual Educational Forum is a unique opportunity for patients and caregivers...

Why Join WhiMSICAL? If you want to “pay it forward” and help current and future WM patients around the world, then join WhiMSICAL! What is WhiMSICAL? WhiMSICAL is the first patient- and medical researcher-led global patient database for Waldenstrom’s...

Brian joined the IWMF in early April. He has a broad background in the private, public, and nonprofit sectors. He graduated from Columbia College, earned an MPP (Public Policy) from the University of California (Berkeley), and an MBA in Finance and Accounting from...

The IWMF’s new online community, IWMF Connect, enables participants to connect with each other via either email or an online discussion board format. IWMF-Talk, the existing email discussion list, is being replaced by IWMF Connect, and its members have been moved...

The walk will take place at the IWMF Patient Educational Forum in Phoenix, Arizona. This year, during the 1st Annual Walk for Waldenstrom’s, besides getting fresh air, healthy exercise, and sharing good company, walkers will have the option to help others on their...

Eva Hoff Wanderaas, MD and PhD, a WM patient and member of the IWMF and WM-Scandinavia, decided that “she would try her hand” at translating a few of the simpler IWMF Fact Sheets. Before it was all said and done, she translated all eight publications that have to do...

This story in Italian can be found here(link is external). I waited for months before I made the decision to write this simple page about my story. I don’t know what the exact reason for my hesitation was, but I believe I was not ready or not completely convinced that...

The IWMF’s exciting new alliance with the American Association for Cancer Research (AACR) will make a difference by helping the IWMF raise awareness and by facilitating collaboration with other patient advocacy organizations. Founded in 1907 by a small group of...

The strong response to a specialized RFP like this one is a testament to the dedication and focus that many in the cancer research community are now placing on rare diseases like WM, and to the generosity of donors who give to the IWMF to support such efforts. When...

This booklet, first published in 2007, has been updated and expanded to include the newest tests used for diagnosis and monitoring of WM. IWMF has consolidated, updated and expanded the information on blood tests used for diagnosis and monitoring of WM for reissue as...

"I think I feel something," murmured the nurse practitioner during a GI appointment. I was initially there to schedule a colonoscopy. Lying on the exam table I strained my head upward wondering if I could possibly see what she was feeling. "Let me get the doctor to...

Jennifer Silva joined us on February 20, 2017. She is replacing Kathy Launder, as Kathy and her husband are relocating back to their home state of Wisconsin. Please join me in fondly wishing Kathy well in her move back home. As Operations Manager, Jennifer will be...

Mar 2, 2017 The IWMF is pleased to announce that Beverly Docteur has joined the IWMF Board of Trustees, and will assume the role of Secretary/Treasurer. Beverly has over 30 years of financial experience and over the last fifteen years, has been the Chief Financial...

Feb 28, 2017 For many years, at each IWMF Ed Forum, several attendees would take part in an opportunity to get some fresh air, exercise, and share stories with each other as they walked beyond the hotel property where the event was held. This year, the 2017 IWMF...

The overwhelming response to the RFP is a testament to the dedication and focus that many in the cancer research community are now placing on rare diseases like WM, and to the generosity of donors who give to the IWMF to support such efforts. When announcing the new...

Dr. Jyh-Seng Wang, the IWMF Affiliate leader in Taiwan, has recently published a paper on WM which was published in the Taiwan Medical Journal, a leading medical journal in that country. The paper, “An Introduction to Waldenstrom’s Macroglobulinemia (WM)”, written in...

My story begins in 2011, when I was 55 years old. I had been a professional ballerina, blessed with good health and good eating habits. Even after I had to quit dancing because of lower back problems, I remained active – running, biking, hiking, kayaking, and going to...

The two presentations by Dr. Treon regarding Waldenstrom’s Macroglobulinemia are: Part A: “Biology 101 of Waldenstrom’s Macroglobulinemia,” which discusses MYD88 and CXCR4, and identifies two new clinical trials. Part B: “Treatment 101 for Waldenstrom’s...

If you were not able to attend the workshop on 11 January 2017, “Advances in the Treatment of Waldenstrom’s Macroglobulinemia (WM),” it is available online via webcast here(link is external), or on telephone replay 24 hours a day, 7 days a week. Just call...

It was June of 1995. I was about to have a very special week. What I thought was going to be special was that on this particular Monday, my wife Sue was flying to Tallahassee, Florida, to defend her doctoral dissertation at Florida State University. She would be on...

The 2017 IWMF Educational Forum will take place in Phoenix, Arizona from May 19-21, 2017, and will be the one place where everyone speaks the same disease language and fully understand what you’re going through. It also will be the one place where you can learn from...

On Wednesday, January 11, 2017, from 12:30 -1:45PM EST Dr. Stephen Ansell of the Mayo Clinic and Dr. Jorge Castillo of Dana-Farber Cancer Institute will give a presentation on “Advances in the Treatment of Waldenstrom’s Macroglobulinemia (WM).” This free...

McKesson Specialty Health supports a clinical trials program through US Oncology Research that works with physicians to try to help patients enroll in clinical trials right in their own communities. Recently, McKesson Specialty Health published its own “story of hope”...

f you’ve recently been diagnosed with WM and need help, but can’t seem to find information in your preferred language, the IWMF website can help you. Once you’ve utilized the website feature that enables you to translate the content, you’ll find a wealth of...

Regarding the Amyloidosis in WM Request for Proposals (RFP), IWMF President Carl Harrington said, “This RFP represents an extension of our search to improve the quality of life for WMers. While amyloid affects only a small percentage of WMers, we are able to fund this...

Triage Cancer is a nonprofit organization that provides cancer survivorship information to patients, survivors, caregivers, and health care professionals, through educational events and online educational materials and resources (see: TriageCancer.org(link is...

On Wednesday, January 11, 2017 from 12:30-1:45PM EST, Dr. Stephen Ansell of the Mayo Clinic and Dr. Jorge Castillo of Dana-Farber Cancer Institute will give a presentation on “Advances in the Treatment of Waldenstrom’s Macroglobulinemia.” This free...

Linda Nelson, a recently retired pediatric dentist, has joined the IWMF Board of Trustees, and will initially assume the role of Publications Chairperson. Her combination of a strong medical background as a pediatric dental specialist treating children with leukemia,...

We invite you to visit the IWMF website downloadable publications page, where you will find five new Treatment Options Guides. These Guides, based on the most recently published NCCN (National Comprehensive Cancer Network) and IWWM (International Workshops on WM)...

Regarding the 2016 RFP, IWMF President Carl Harrington said, “The 2016 RFP represents an acceleration of our search for a cure for WM. We expect that WM researchers will aggressively compete again to secure funding from us. How many projects we will be able to fund...

The IWWM9 International Doctor-Patient Forum was sponsored by the IWMF and Hematon (the Dutch blood cancer organization), and was held in Amsterdam, The Netherlands, on October 9, 2016. Over 170 people attended the educational forum from 20 countries including all of...

Message from Carl Harrington, IWMF President To better serve our members, support groups, affiliates and partners, we have strengthened the IWMF Office by adding an Operations Manager. I’m pleased to introduce our new IWMF Operations Manager: Kathryn (Kathy) Launder,...

As told to Alice Riginos, IWMF Torch Editor Published in the Torch 17.3 (September 2016), pages 8-11 This story translated into Spanish by Graciela Molina MD, Buenos Aires, Argentina and can be found here. Julie and Wade Davidson visiting Greenfield Village in...

The IWMF is pleased to congratulate the 11 young investigators recognized at the 9th International Workshop on WM (IWWM9) on October 5-8, 2016, in Amsterdam, The Netherlands. The Young Investigator Awards (YIAs) were established to encourage interest, knowledge, and...

WM-Scandinavia will be located in Sweden, with Susanne Ohrn ([email protected](link sends e-mail)) volunteering to be the Support Group Leader. The Affiliate has already established an active closed Facebook group: Waldenström's makroglobulinemi (Skandinavien). Its...

In the mid 1980’s, I began having symptoms that are common to most of us with WM. I saw doctors for seven years before a diagnosis of WM finally was confirmed. But a study of prior blood tests showed high protein levels as early as 1986, and an SED rate that had grown...

Select videos from the 2016 IWMF Educational Forum (held in Providence, Rhode Island, on June 10-12, 2016) are now available. You can also find links to presentation slides and photos of the event at this location. The Educational Forum is a unique opportunity for...

Ali Handal, a professional singer-songwriter, guitarist, and author, whose songs have been featured in numerous films and hit shows like Sex and the City and Dawson’s Creek, captivated the audience at the 2016 IWMF Ed Forum with stories of what she’s learned thus far...

At the June, 2016 Board of Trustees meeting, the IWMF Board approved a renewal of Dr. Steven Treon’s project on Targeting MYD88 assembly and downstream signaling in Waldenstrom’s Macroglobulinemia, along with three research proposals from the IWMF-Leukemia &...

Over the years, we’ve had the good fortune to receive inquiries from WMers eager to use their runs, bike rides, and even rowing endeavors to fundraise for the IWMF. We’re proud of, and grateful to, all the members who’ve taken it upon themselves to host fundraisers on...

The IWMF Judith May Volunteer of the Year Award is given annually to a volunteer who has made far-reaching contributions to the well-being of the WM community and who reflects the spirit of volunteerism, which is the core principle of the award. Following a...

At the 2016 IWMF Educational Forum, attendees had the opportunity to share stories about their individual cancer journey, learn how best to manage life with WM, and hear the latest news about exciting research advances direct from top investigators and clinicians....

Dr. Michael J. Smith: 22 Years and Counting - My WM Journey The following is an account of a life journey with Waldenstrom’s Macroglobulinemia (WM) that later turned into WM/Lymphoma (WM/L). My story is aimed at beginning patients, so I will cover the WM episode more...

The 9th International Doctor-Patient Forum on WM will be held on October 9, 2016 in Amsterdam, the Netherlands, and will feature presentations by physicians/researchers participating in the 9th International Workshop on WM (IWWM9). The Doctor-Patient Forum will be...

At the 2016 IWMF Educational Forum in Providence, RI from June 10-12, IWMF President Carl Harrington announced the 2017 IWMF Educational Forum will be held at the Renaissance Hotel(link is external) in downtown Phoenix, Arizona. The 2017 event will be held from May...

Recognizing the need to provide information about WM to those who don’t speak English, the IWMF is pleased to announce availability of publications in additional languages. Many of our WM booklets and treatment fact sheets are now available in Chinese, French, Italian...