About the IWMF and their Partner Organizations

Video Shorts and Presentations About WM, the IWMF, and Their Partner Organizations

with Researchers, Patients, and Caregivers

2019 Welcome Address

Carl Harrington, IWMF President, 2019 Ed Forum
Welcomes everyone to the 24th IWMF Educational Forum and discusses the differences in number of members of the IWMF, #’s of treatments available, and life expectancy in 1994-98 vs. 2019. Also discussed are IWMF sponsored research, IWMF support groups, and international affiliates.

Introduction to IWMF

The IWMF is here to help you! Peter DeNardis, Board Member of the IWMF talks about what it is like to be diagnosed with Waldenstrom’s macroglobulinemia and how the Foundation helps everyone affected by the disease through its efforts to promote awareness, provide education and support, and fund research directed to finding better treatments and a cure for WM.

The Research Roadmap Roundup

Stephen Ansell MD, PhD – Mayo Clinic Rochester, 2018 Ed Forum
Provides the IWMF-LLS Strategic Research Roadmap and addresses the uniqueness of WM, its genomics, epigenomics, MYD88 L265P and CXCR4 mutations, and treatment options

The I-Patient - Virtual Networking with Other WMers & the WhiMSICAL Database

Peter DeNardis – IWMF (assisted by Andrew Warden – Wmozzies , Australian affiliate of IWMF), 2018 Ed Forum
Presents information about IWMF Connect, Facebook, IWMF e-News, advocacy, and surveys for data bases (like WhiMSICAL)

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Help in Choosing a Clinical Trial

Alissa Gentile, MSN, RN – Leukemia & Lymphoma Society (LLS), 2018 Ed Forum
Reviews myths about clinical trials, how to find clinical trials, how LLS can help locate clinical trials that might be right for you, and what are your rights around clinical trials

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Welcome Address

Carl Harrington – IWMF President, 2018 Ed Forum
Welcomes participants of the 2018 IWMF Educational Forum and provides a framework for the sessions

Member Resources: IWMF Connect and Website Highlights

Peter DeNardis – IWMF Trustee, 2018 Ed Forum
Provides sources of information from IWMF for patients with WM and their families, including the IWMF website, the IWMF Facebook page, the closed WM Facebook support page, IWMF Connect, e-News for those who join IWMF, emails, support groups, international affiliates, Lifeline (one on one support by subject matter), publications written specifically for patients with WM and their families, Physicians Directory (medical experts in WM from around the world), research information on WM, Stories of Hope, fundraising for the IWMF, crowdfunding, financial assistance resources

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IWMF/LLS Research Roadmap

Guy Sherwood, MD – IWMF Vice President for Research, IWWM9 Doctor-Patient Forum, 2016

About the IWMF

Carl Harrington –  IWMF President, IWWM9 Doctor-Patient Forum, 2016

An Exciting Time in Waldenstrom's!

Stephen M. Ansell MD, PhD – Mayo Clinic, Rochester, 2016 Ed Forum
Explains the IWMF-LLS Strategic Research Roadmap and its importance to the WM community

Research and IWMF

Stephen M. Ansell MD, PhD – Mayo Clinic, Rochester, 2015 Ed Forum
Dr. Ansell talks about his interest in WM, the funding provided by the IWMF for his research, and the team effort he is involved in with WM patients and the IWMF.  He also discusses the current exciting times for WM in terms of research, with opportunities for improved treatments and the possibility of a cure in the near future.

Benefits of being an “Empowered Patient” and the IWMF

Peter DeNardis – Patient/IWMF Trustee, 2015 Ed Forum
Peter, a patient and IWMF Trustee, discusses the benefits to patients and caregivers of IWMF-TALK (an online discussion forum, now known as IWMF Connect) and the importance of being “empowered” patients.

Impact of IWMF Funding for Research on Mayo Clinic Patients with WM

Morie Gertz, MD, MACP – Mayo Clinic, Rochester, 2015 Ed Forum
Dr. Gertz talks about the Mayo Clinic approach to treating WM patients and the impact that IWMF funding for research has had on the search for improved treatments and a cure for WM

The Leukemia & Lymphoma Society (LLS) and the IWMF, Partners in the Strategic Research Roadmap Towards a Cure for WM

Lee Greenberger, PhD – Chief Scientific Officer, The Leukemia & Lymphoma Society, 2015 Ed Forum
Dr. Greenberger discusses the LLS’s plans to support the IWMF with new research that could lead to a better understanding of the disease and in turn could support the development of novel treatments and a cure. He also provides a quick summary of the importance of immune system modulation/immunotherapy research.

Impact of IWMF Funding for Basic Scientific Research on WM at Dana Farber Cancer Institute

Zachary Hunter, PhD – Dana Farber Cancer Institute, Boston, 2015 Ed Forum
Dr. Hunter speaks about his research into WM with Dr. Treon at DFCI. He specifically mentions the importance of basic scientific research and the IWMF’s role in that research.  He also reveals that there is familial WM in his family, along with close family friends.

Benefits of IWMF Services for Newly Diagnosed Patients with WM

Lu Kleppinger – Patient/IWMF Support Group Leader, 2015 Ed Forum
A WM patient, Lu covers her experience at diagnosis, discusses tips for what a first time patient should do, and encourages folks to take advantage of the IWMF’s services and to become active in the Foundation.

How Far We Have Come with IWMF Research and the Treatment of WM

Robert Kyle, MD – Mayo Clinic, Rochester, 2015 Ed Forum
Dr. Kyle speaks on a range of topics: his background and early days treating WM patients; the many benefits provided by the IWMF, especially to the newly diagnosed; the critical role of IWMF-funded research; the future of research; and the promising days ahead for better management of WM.

Research on WM at the National Cancer Institute

Mary McMaster, MD – National Cancer Institute, Bethesda, Ed Forum 2015
Dr. McMaster explains how she came to be involved with WM and discusses her interest and research into the familial aspects of WM at the US National Cancer Institute.

IWMF Research on WM and Immune-based T-cells

Julie Nielsen, PhD – BC Cancer Agency, Canada, 2015 Ed Forum
Dr. Nielsen talks about what led her to focus on WM and on immune-based T-cell research. She also provides insight into the promise that these new research areas hold for developing new and better treatments for WM patients.

Benefits of IWMF Services for Caregivers

Gilbert Scherer, Caregiver, Ed Forum 2015
As a caregiver, Gilbert discusses how he and his wife dealt with a WM diagnosis and were educated by engaging with the IWMF, attending an IWMF Ed Forum, and volunteering for the Foundation. His words speak volumes about the benefit of joining the IWMF and taking advantage of the services that it offers, as well as the importance of funding the IWMF to drive the basic research that is so vital for better treatments, and ultimately, a cure.

IWMF Funding of Landmark Discoveries in WM and how Continued Funding is Critical for Future Management of the Disease

Steven P. Treon, MD, PhD – Dana Farber Cancer Institute, Boston, 2015 Ed Forum
Dr. Treon discusses his interest in WM and WM research, focusing on the whole genome sequencing research supported by the IWMF that helped make the critical discoveries of the MYD88 and CXCR4 mutations. He also mentions that continued funding of WM research is critical to future success in managing the disease.

IWMF Support Groups and their Impact on the Newly Diagnosed Patient

Lisa Wise – Patient/IWMF Support Leader, 2015 Ed Forum
As a WM patient, Lisa talks about her diagnosis and the benefits provided by the IWMF. She also discusses her initial reluctance to attend a Support Group and her subsequent realization that the Group has been of great support to her personally.

Doctor, How Long Am I Going to Live?

Jeffrey Matous, MD- Colorado Blood Cancer Institute, 2015 Ed Forum
The prognosis varies from person to person, depending upon a variety of factors, including age at diagnosis and severity of symptoms. Fortunately recent advances in research (much of which has been funded by the IWMF) have extended this diagnosis significantly.

Dr. Jan Waldenstrom – our Patron Saint

Robert Kyle, MD – Mayo Clinic, Rochester, 2015 Ed Forum

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Judith May Story

Robert Kyle, MD – Mayo Clinic, Rochester, 2015 Ed Forum

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IWMF Keynote Address

Kenneth Anderson, MD – Dana Farber Cancer Institute, 2015 Ed Forum
Covers treatments then (1995) and now (2015), survival

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IWMF Research – History & Progress

Guy Sherwood, MD – IWMF Vice President for Research, 2015 Ed Forum

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IWMF Member Services – History & Progress

Carl Harrington – IWMF President, 2015 Ed Forum

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Maps of Where IWMF Members Are

Carl Harrington – IWMF President, 2015 Ed Forum

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