News

Register now to attend the 5th International Patient and Physician Summit on Waldenstrom’s Macroglobulinemia at: www.waldenstromsummit.org(link is external). The Patient and Physician Summit will be held on October 13th and 14th, 2018 at the New York Marriott Downtown...

The IWMF is pleased to announce that the U.S. Food and Drug Administration (FDA) has approved the combination treatment of Imbruvica (ibrutinib) together with Rituximab (rituxan) for patients living with Waldenstrom’s macroglobulinemia.  (Pharmacyclics had filed a...

Tom Hoffmann, MD, a recently retired cardiac surgeon, has joined the IWMF Board of Trustees. While Tom has been an active volunteer member of the IWMF’s Research Committee since 2002, this is actually a “return engagement” for Tom, as he previously served on the Board...

This is the third in a series of three videos recently produced for the IWMF. In this video, Pete DeNardis, Board Member of the IWMF, welcomes those who are new to the IWMF and the IWMF website, explains the many services provided by the IWMF, and encourages visitors...

The article goes on to describe WM, its rarity, and recent advances in treatment options for patients.  It also provides a quick summary of the history of approved treatments for the disease, and includes comments from interviews with WM patients (Pete DeNardis and...

Cure Magazine’s special issue on Rare Cancers, published on August 1, 2018, includes an article entitled “Waldenstrom Macroglobulinemia: The Discovery and What Lies Ahead”. The article goes on to describe WM, its rarity, and recent advances in treatment options for...

This is the second in a series of three videos recently produced for the IWMF. In this video, Bob Rupert, a WM patient, discusses how WM has affected his life and his family, and how he approaches living with the disease. His story and his message reinforce the...

Recently, Dr. John Chapin, a Professor of Communications at the Pennsylvania State University’s Beaver Campus approached the IWMF about a project whereby his students would develop and produce short videos for the IWMF.The end result is three new videos, which will be...

The 5th International Patient & Physician Summit on Waldenstrom’s macroglobulinemia will be held on the weekend of October 13-14, 2018 at the New York Marriott Downtown Hotel in the heart of Financial District just a few blocks from the Freedom Tower. This will be...

Ibrutinib was the first drug that was approved by the US Food and Drug Administration (FDA) specifically for Waldenstrom’s macroglobulinemia (WM). In the past couple of years there has been an explosion of research on ibrutinib of special interest to patients with WM...

The 2018 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...

Some four years ago, at the age of 70, my wife and I pulled up stakes and left Iowa, where we had resided for 32 years, to move to the State College area in Pennsylvania. This would allow us to be more active participants in the lives of our two grandchildren. As...

If you were not able to attend the workshop on 27 June 2018, “Progress 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 1-800-625-5288...

On Wednesday, June 27th 2018 from 1:30PM – 2:30PM EST, Drs. Jorge Castillo and Morie Gertz will share an update on treatment for WM. This informative program is free, but pre-registration is required to participate. IWMF and CancerCare are excited about bringing you...

The 2019 IWMF Educational Forum will take place in downtown Philadelphia at the DoubleTree by Hilton Philadelphia Center City(link is external) from June 7-9, 2019. Mark your calendars now for this event! The IWMF’s annual Educational Forum is a unique opportunity for...

On Wednesday, June 27th 2018 from 1:30PM – 2:30PM EST, Drs. Jorge Castillo and Morie Gertz will share an update on treatment for WM. This informative program is free, but pre-registration is required to participate. IWMF and CancerCare are excited about bringing you...

  “Get your affairs in order.” “You have a rare, incurable blood cancer called Waldenstrom’s macroglobulinemia.” “Average survival rate is 6 years.” “Given your symptoms and blood test values, we have to treat immediately.” Those were jarring words for someone in...

My life so far has been an exciting journey, punctuated by a cascade of medical events. Never a dull moment. You don’t know how you’ll respond to bad news until you are faced with it. I’ve had plenty, but there has always been hope. It began the day I was born a...

On February 16, 2018, a new formulation of Imbruvica (ibrutinib) was approved by the US FDA in multiple strengths as a 140, 280, 420, and 560 mg tablet. At that time, Pharmacyclics stated that the original 140 mg capsule will no longer be available after May 15, 2018....

The 2nd Annual Walk for Waldenstrom’s will take place at the IWMF Patient Educational Forum in Rosemont (Chicago), Illinois. This year, during the Walk, besides getting fresh air, healthy exercise, and sharing good company, walkers will have the option to help others...

On Wednesday, June 27 from 1:30-2:30PM EST (USA), you can participate in this educational workshop online or by phone. The program is free, but you must register to participate. This will be the fourth collaboration between IWMF and CancerCare in a Connect® Education...

Newly revised in 2018, the IWMF About Waldenstrom’s Macroglobulinemia – Details Fact Sheet is a ten page summary of what is presently known about WM. This revision includes information about the causes, risk factors, prognosis, signs and symptoms of the disease,...

Now in its third revision, the IWMF 2018 booklet explains the basic concepts of immunology and genetics as they pertain to WM. In the past few years there has been an explosion of research and discoveries in immunology and genetics of special interest to patients with...

The newest IWMF Affiliate, under the leadership of Roger Yao, will be based in Shanghai. Roger has a family member who was diagnosed with WM in 2017. He and his family have experienced first-hand the value of information about WM and the support needs of patients....

On February 16, 2018, Imbruvica (ibrutinib) was approved by the US FDA in multiple strengths as a 140, 280, 420, and 560 mg tablet. The new formulations are now commercially available, and the original 140 mg capsule will no longer be available after May 15, 2018....

The lecture on WM, featuring Dr. Ansell, Professor of Medicine in the Division of Hematology at the Mayo Clinic, Rochester, MN, is now available at The Leukemia & Lymphoma Society (LLS) website. WM topics covered include: Who needs treatment at presentation...

On Wednesday, June 27th, 2018 from 1:30PM – 2:30PM EST, Dr. Jorge Castillo of Dana-Farber Cancer Institute and Dr. Morie Gertz of Mayo Clinic will engage in a discussion on “Progress in the Treatment of Waldenstrom’s Macroglobulinemia (WM).” The program is free, but...

The Lymphoma Coalition is a global network of non-profit lymphoma patient organizations, including the IWMF, with a vision to free the world of lymphoma.  Every two years, the Lymphoma Coalition conducts a global survey of lymphoma patients. This year’s survey seeks...

The 2017 Lymphoma Research Foundation (LRF) Annual North American Educational Forum on Lymphoma included a presentation about Waldenstrom’s macroglobulinemia, which was recently added to the LRF’s YouTube channel. Dr. Castillo’s discussion on “Treatment Options in WM”...

Until recently, it was not possible for WM patients to be safely vaccinated against varicella zoster, commonly called shingles, because the vaccine, Zostavax, was a live virus vaccine not recommended for the immunocompromised, including those with blood cancers....

With a population of just over four million, New Zealand is a small country in numbers of people, but not in land mass. It comprises three main islands – North, South and Stewart. Lea Hullett, diagnosed with WM in 2014, decided that irrespective of the distances, WM...

The Lymphoma Coalition is a global network of non-profit lymphoma patient organizations, including the IWMF, with a vision to free the world of lymphoma. Every two years, the Lymphoma Coalition conducts a global survey of lymphoma patients. This year’s survey seeks to...

The 2018 IWMF Educational Forum will take place in Rosemont, Illinois (near Chicago O’Hare Airport), from May 18-20, 2018. This will be your opportunity to learn from top researchers and clinicians (and fellow patients and caregivers) about the latest and greatest in...

Dr. Ruth Spearing, Carl Harrington (IWMF President), Ibrahim Tohidi, and Dr. Judith Trotman (at ASH 2017 Poster Session) What is WhiMSICAL? WhiMSICAL is the first patient- and medical researcher-led global patient database for Waldenstrom’s macroglobulinemia....

Through the efforts Dr. Christian Buske and Lisa Marie Kaiser of Germany, all the IWMF Treatment Fact Sheets have been translated into German. Dr. Buske is the 2015 recipient of an IWMF-LLS Research Roadmap grant, and Ms. Kaiser was the recipient of a WM Young...

I decided to publicize my experience as a person suffering from Waldenström's macroglobulinemia (WM) because, regardless of the importance of sharing clinical and therapeutic aspects with other patients, my own has turned out to be one of the (not very rare) cases in...

The Forum was sponsored by the IWMF and Hematon (the Dutch blood cancer organization) and followed the 9th International Workshop on WM (IWWM9). The attendees heard about current WM treatment options and the significant progress being made in research from leading...

Thanks to researchers and to clinical trial participant patients around the world, and as a result of research funded by the IWMF and its International affiliates, significant progress has been made in recent years in developing and using treatments specifically for...

The WhiMSICAL research team, led by researchers in Australia, has received approval to present their findings during a poster presentation at the American Society of Hematology’s annual meeting in December 2017. This is a significant achievement and validation of...

A longstanding partner organization for the IWMF, the Leukemia & Lymphoma Society (whom we work with on the IWMF-LLS Strategic Research Roadmap), is providing three one-hour programs addressing survivorship issues as part of their Survivorship Series for lymphoma...

If you were not able to attend the workshop on 4 October 2017, “What’s New 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...

Finding a clinical trial for your own personal health situation can be a daunting task! Fortunately, the Leukemia & Lymphoma Society (LLS) provides a service to WM patients and their families in the US – a Clinical Trial Support Center. The Center is staffed by...

This new booklet answers frequently asked questions about WM in language that is understandable for those who may not have a strong background in biology. The IWMF Frequently Asked Questions booklet is designed to support both newly diagnosed and veteran Waldenstrom’s...

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

o ensure that the IWMF staff had time to personally prepare for Hurricane Irma, the IWMF Office was closed on Friday, September 8. Prior to the office closing, the IWMF Office Hurricane Preparedness plan was put in place, including the protection of important and...

In August, the IWMF welcomed Patient Worthy as another important addition to the growing number of patient support organizations motivated to make a difference! Patient Worthy focuses on collaborating with rare disease advocacy groups to help spread awareness and...

Waldenstrom Mexico (WM-Mexico) will be located in Mexico City. However, Polo hopes that over time the Support Group will reach WM patients and caregivers who live in the greater Mexico City area, which is the largest Spanish-speaking city in the world, and is the...

WM-India will be located in Bangalore and it will focus its WM support efforts to patients and caregivers in three large cities: Mumbai, Bangalore and Kolkata. Saurabh Seroo, a WM caregiver, will be the Support Group Leader. He can be reached...

This story is about the caregiving side of my life. It’s about the love of my life, too. John and I married in 1974 when I was 19, and he was 30. In December 2015, John retired from our shared psychology practice. I decided to increase my practice to full-time, and...

I had indolent WM for twenty years, but amyloid deposits in my lung hospitalized me eighteen months ago. I discuss my experiences with Rituxan, ibrutinib, and an autologous stem cell transplant (ASCT). I am now 68 years old. 23 years ago, during a routine physical...