News

Dr. Castillo, of the Dana-Farber Cancer Institute, is one of the world’s leading clinicians for Waldenstrom’s macroglobulinemia, and provides a valuable perspective, especially since: There are approximately 1,500 WM patients diagnosed each year in the United States....

To better support WM patients worldwide, IWMF Info Paks for Patients are now available in Chinese (Simplified & Traditional), French, Italian and Spanish. The new international Info Paks were developed with the assistance and support of the IWMF International...

This week is National Volunteer Week in the US. We should all take a moment to thank the volunteers who make the IWMF work for all of us. The IWMF is volunteer-led and largely patient-funded. We were founded in 1994 by a patient, Arnie Smokler, a retired pharmacist....

The IWMF and the WM Foundation of Canada have confirmed that, as of March 31, 2016, Health Canada has updated their “Notice of Compliance with Conditions (NOC/c) for Imbruvica (ibrutinib)” to include treatment for WM patients. This means that it is now available for...

Please complete the Waldenstrom’s Macroglobulinemia (Lymphoplasmacytic Lymphoma) Patient and Caregiver Surveys by Wednesday, April 27th (see links at bottom). There are preliminary indications that Imbruvica may be approved soon by Health Canada, but formal press...

Sara McKinnie is taking on a new position as Partnership and Meeting Coordinator. In this role, Sara will focus on expanding and enhancing IWMF’s relationships with other lymphoma cancer partners, managing the annual IWMF Educational Forum, managing the production of...

Rare Cancer Doesn't Need to Be Fought Alone March 18, 2016 Davy James RELEVANT TOPICS A diagnosis of Waldenstrom's macroglobulinemia can be scary, but it doesn't need to be faced alone. A cancer diagnosis can be profoundly frightening, rattling a person straight to...

Many of you know Wanda from her frequent insightful posts on the IWMF-Talk email discussion forum. Wanda is a registered nurse who specializes in behavioral health and psychiatric care. She will chair the IWMF Clinical Trial and Lifeline Committees. You’ll be able to...

The 21st IWMF Ed Forum will be held in Providence, RI, on June 10-12, at the Omni Providence Hotel downtown, so make your plans now to attend. The theme this year is Imagine a Cure: Pathways to Progress to highlight the exciting Strategic Research Roadmap Initiative...

Since 2000, as part of its commitment to furthering the advance of WM research, the IWMF has supported the biennial global International Workshops on Waldenstrom’s macroglobulinemia (IWWM), which provide physicians, medical specialists, and researchers the opportunity...

World Cancer Day is Thursday, February 4, 2016. This observance was created to save lives by promoting awareness and education about cancer, and to press governments and individuals around the world to take action. It unites everyone worldwide to work together to find...

Dr. Steven Treon from Dana-Farber Cancer Institute recently gave two presentations at the Lymphoma Research Foundation (LRF) Educational Forum that are now available online. The two presentations are: “Waldenstrom’s Macroglobulinemia-Part A” (Biology of Waldenstrom’s...

The RFP was developed jointly by the IWMF and the Leukemia & Lymphoma Society (LLS) and sent in mid-November to over 200 researchers. It is the direct result of a conference held in May 2015 in New York City that identified four research priority areas focused on...

The IWMF is partnering with CURE (Cancer Updates, Research, and Education) Media Group, the leading US digital and print media company focused on cancer patients, to provide access to up-to-date information for WMers. CURE Media Group provides a free magazine, along...

Dr. Stephen Ansell, MD, PhD, has agreed to join the IWMF Board of Trustees. Most WMers will recognize Dr. Ansell from his frequent presentations at IWMF Educational Forums, his articles in the Torch, his presentation at the recent CancerCare webinar, and his seminal...

n the video, Jennifer Brown, MD, PhD, of Dana-Farber Cancer Institute and Richard Furman, MD, noted WM researcher/clinician from Weill Cornell Medical College, discuss the recent approval of ibrutinib therapy for WM patients, along with their perspective on the impact...

Each year, the US National Comprehensive Cancer Network (NCCN) publishes updated treatment guidelines for various forms of cancer, including Waldenstrom’s macroglobulinemia (WM). On September 16, 2015, the NCCN updated its guidelines for WM. The significant changes...

The IWMF is pleased to welcome two new members to its prestigious Scientific Advisory Committee (SAC) chaired by Dr. Robert Kyle of the Mayo Clinic. Dr. Brian Van Ness from the University of Minnesota, USA, and Dr. Surinder Sahota from the University of Southampton,...

The IWMF is aware that the potential cost of novel oral medications such as IMBRUVICA® (ibrutinib) is a recent and growing concern to the WM community. The Johnson & Johnson Patient Assistance Foundation provides assistance to uninsured US patients who lack the...

On Wednesday, September 2nd, the IWMF partnered with the U.S.-based cancer support services organization, CancerCare, in a Connect Education Workshop on WM. Dr. Stephen Ansell of the Mayo Clinic and Dr. Steven Treon of Dana-Farber Cancer Institute gave a well-received...

WMF is partnering with the U.S.-based cancer support services organization, CancerCare, in a Connect Education Workshop on WM. On Wednesday, September 2nd, from 1:30 – 2:30PM EST, Dr. Stephen Ansell of the Mayo Clinic and Dr. Steven Treon of Dana-Farber Cancer...

Dr. Robert Kyle, Professor of Medicine and Laboratory Medicine and Pathology at Mayo Clinic in Rochester, Minnesota, and noted international expert on WM, recently celebrated a landmark 52-year anniversary with a former patient – the longest surviving patient to...

AbbVie announced on July 10, 2015, that the European Commission has granted marketing authorization for Imbruvica (ibrutinib) for the treatment of Waldenstrom’s macroglobulinemia (WM) in adult patients who have received at least one prior therapy, or in first-line...

Select videos from the 2015 IWMF Educational Forum (held in Dallas, Texas, on May 1-3, 2015) are now available on the IWMF website. You can also find links to presentation slides and photos of the event at this location. The Educational Forum is a unique opportunity...

On May 16-17, a joint IWMF/Leukemia & Lymphoma Society (LLS) Strategic Research Roadmap Conference was held in New York City. Its purpose was to identify the gaps in our knowledge of WM and to strategize our research priorities so that we can fill those gaps,...

The Leukemia & Lymphoma Society (LLS) Telephone/Web Educational Program - Clinical Trials or Standard Treatment? Understanding Options for Blood Cancers presented by John P. Leonard, MD, Weill Cornell Medical College, on 3/18/15, is now available as a webcast. The...

On May 22, 2015, Pharmacyclics, Inc. announced that the Committee for Medicinal Products for Human Use of the European Medicines Agency (EMA) issued a positive opinion recommending that Imbruvica (ibrutinib) be approved to treat WM patients who have received at least...

The following new clinical trials are currently open in the US to patients with WM. Details about each of these trials can be found at www.clinicaltrials.gov(link is external) by entering the trial identification number in the “ Search for Studies” box. New Clinical...

There are currently 38 topics on the IWMF LIFELINE. While some of the topics have to do with various treatments, others deal with issues of living with WM. We have recently added ten new LIFELINE volunteers on a number of topics to provide easier access for those who...

The 2015 Educational Forum, which was held in Dallas, TX, on May 1-3 at the Hilton DFW Lakes Executive Conference Center is now over. Attendees had the opportunity to share stories about their individual cancer journey, learn how best to manage life with WM, and hear...

Effective May 11, the Leukemia & Lymphoma Society (LLS) announced a new Co-Pay Assistance Program for WM patients to offer financial help toward their treatment-related co-payments, premiums for private health insurance, and premiums and co-pay obligations for...

Alice Riginos, editor of the Torch newsletter, was just recognized at the 2015 IWMF Educational Forum in Dallas with the presentation of the Judith May Volunteer of the Year Award. This award, named in honor of IWMF President Emerita Judith May, is given annually to a...

2020 IWMF Virtual Educational Forum  THANK YOU to all who attended the 2020 IWMF Virtual Educational Forum. We had over 1,300 registrants from over 30 countries! The Virtual Educational Forum is now available on-demand. If you missed a part of the program or would...

The IWMF is pleased to support our non-English-speaking WM community by making available our Treatment Fact Sheets in French and Spanish as well as English. These fact sheets are short two-page summaries of several of the more common WM treatments (Bendamustine,...

PAN ASSISTANCE FOR WM PATIENTS WM patients may be eligible to receive financial assistance from the Patient Access Network (PAN) Foundation to help with high prescription co-pays and deductibles. The PAN Foundation is a national 501 (c)(3) charitable not-for-profit...

The IWMF is pleased to welcome its newest International Affiliate – the first in Asia – the IWMF Support Group – Taiwan. The Support Group was established under the leadership of Jyh-Seng Wang, M.D., from Kaohsiung Veterans General Hospital, and will be reaching out...

PBS will air the three-part Ken Burns series, Cancer: The Emperor of All Maladies, on March 30, 31, and April 1, from 9:00-11:00 PM EST (please check your local listings for the scheduled times in your area). The series is based on the Pulitzer Prize-winning book, The...

More good news on the world-wide expansion of support services for WM patients comes from Down under Australia. “WMozzies”, the IWMF Affiliate in Australia, is combining resources with the Leukaemia Foundation to provide nationwide WM patient Support Group coverage in...

The IWMF’s newest International Affiliate, WM-España, is based in Navarra, Spain under the leadership of Miguel Angel Berrueta. We hope for its success in reaching out and welcoming those in Spain touched by Waldenstrom’s macroglobulinemia (WM). Anyone interested in...

The Amyloidosis Foundation is offering a free, one hour webinar on March 16th from 4:00-5:00 EST. This seminar will be conducted by Dr. Morie Gertz of the Mayo Clinic. For more information and to register now, click here(link is external). There are a limited number...

From February 27 to March 1, the Lymphoma Coalition (LC), an international network of lymphoma patient groups that includes the IWMF, will be running an ad in the USA Today newspaper as part of the newspaper's "The Future of Blood Cancer" special publication during...

IWMF President and WM patient Carl Harrington has written an article entitled “What To Do When Diagnosed With a Rare Cancer," published on the Cure magazine website(link is external) and in its rare cancer newsletter. See his advice on the six steps(link is...

The IWMF’s newest International Affiliate, Macroglobulinemia De Waldenstrom Argentina, is based in Buenos Aires, Argentina, under the leadership of Graciela Silvia Molina, MD. We hope for its success in reaching out and welcoming those in Buenos Aires touched by...

To provide the latest news on advances in WM research and treatments, and up-to-the minute information on our services to members, the IWMF will use both Facebook and Twitter. “Like” us “Follow” us

Oncology Nursing News magazine interviewed Carl Harrington, president of the IWMF, to properly present the impact that the US FDA's decision to approve imbruvica (ibrutinib) specifically for WM has on WM patients. He also discusses the significance of the IWMF in...

The complete article is at: http://tinyurl.com/iwmf-ibrutinib

In a history-making moment for WM patients, the IWMF is pleased to announce that Imbruvica (ibrutinib) has just received FDA approval specifically for the treatment of WM, thus becoming the first drug therapy to achieve this designation. Imbruvica, developed jointly...

"Waldenstrom's and MGUS in Families: Your Questions and Answers." Dr. Mary Lou McMaster of NIH discusses WM biology and treatments and focuses on the topic of familial WM in her presentation to the Northern Virginia IWMF Support Group in October 2014. This video is...

We are pleased to announce the establishment in Italy of an IWMF Affiliate/Support Group under the sponsorship of Dr. Enrica Morra, President of Associazione Malattie del Sangue ONLUS, Scientific Director of the Lombardy Hematology Network. This is the first such...