International Waldenstrom’s Macroglobulinemia Foundation

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Educational Forum Multimedia

2021
2021 Virtual Ed Forum videos and presentations

Get all the presentations and videos by going HERE!

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2020

Current Treatment Options for Waldenstrom Macroglobulinemia

Current Treatment Options for WM provides a concise and informative review of both current and upcoming treatment options, along with the pros and cons of each.

Jorge J. Castillo, MD is Associate Professor at Harvard Medical School and Clinical Director of the Bing Center for Waldenstrom Macroglobulinemia at Dana-Farber Cancer Institute.

A Look into the Future: Treatments on the Horizon

A Look into the Future: New Treatments on the Horizon provides a concise and informative review of both current and upcoming treatment options, along with the pros and cons of each.

Jorge J. Castillo, MD is Associate Professor at Harvard Medical School and Clinical Director of the Bing Center for Waldenstrom Macroglobulinemia at Dana-Farber Cancer Institute.

Improving Patient Outcomes through Discovery: Waldenstrom's Macroglobulinemia (English)

Improving Patient Outcomes through Discovery: WM - Dr. Treon presented details of past and ongoing research and discoveries (many of which occurred at the Bing Center) with regard to WM treatments and pointed toward what lies ahead as we look to the future of WM.

Steven Treon, MD, PhD, is the Director of the Bing Center for Waldenstrom's Macroglobulinemia at Dana-Farber Cancer Institute (DFCI), a Professor of Medicine at Harvard Medical School, and Chair of the WM Clinical Trials Group.

Improving Patient Outcomes through Discovery: Waldenstrom's Macroglobulinemia (Chinese)

通過發現改善患者的治療效果:西醫-Treon博士介紹了有關西醫治療的過去和正在進行的研究和發現(其中許多發生在必應中心)的詳細信息,並指出了我們對西醫未來的展望。 史蒂芬·特雷恩(Steven Treon)博士是達納·法伯癌症研究所(DFCI)Waldenstrom巨球蛋白血症的Bing中心主任,哈佛醫學院的醫學教授,WM臨床試驗小組主席。

Improving Patient Outcomes through Discovery: Waldenstrom's Macroglobulinemia (French)

Amélioration des résultats pour les patients grâce à la découverte: MW - Le Dr Treon a présenté des détails sur les recherches et découvertes passées et en cours (dont beaucoup ont eu lieu au Centre Bing) en ce qui concerne les traitements de la MW et a souligné ce qui nous attend alors que nous envisageons l'avenir de la MW. Steven Treon, MD, PhD, est le directeur du Bing Center for Waldenstrom's Macroglobulinemia au Dana-Farber Cancer Institute (DFCI), professeur de médecine à la Harvard Medical School et président du WM Clinical Trials Group.

Improving Patient Outcomes through Discovery: Waldenstrom's Macroglobulinemia (Spanish)

Mejorar los resultados de los pacientes a través del descubrimiento: WM: el Dr. Treon presentó detalles de investigaciones y descubrimientos pasados ​​y en curso (muchos de los cuales ocurrieron en el Bing Center) con respecto a los tratamientos de WM y señaló lo que está por venir mientras miramos hacia el futuro de WM. Steven Treon, MD, PhD, es el director del Bing Center for Waldenstrom's Macroglobulinemia en Dana-Farber Cancer Institute (DFCI), profesor de medicina en Harvard Medical School y presidente del WM Clinical Trials Group.

Strategic Research Roadmap: Getting to a World Without WM

Strategic Research Roadmap: Getting to a World Without WM - Dr. Ansell, who also is a Board member of the IWMF, presented details about the IWMF/LLS Strategic Research Roadmap and the exciting discoveries with regard to WM that are taking place due to the Roadmap research efforts, and encouraged everyone to participate and be engaged with what the IWMF is doing on their behalf.

Stephen M. Ansell, MD, PhD, is a consultant in the Division of Hematology, Department of Internal Medicine at Mayo Clinic in Minnesota.  Dr. Ansell currently serves as chair of the Mayo Clinic Lymphoma Disease-Oriented Group and chair of faculty development and recruitment for the Division of Hematology.  He joined the staff of Mayo Clinic in 1999 and holds the academic rank of Professor of Medicine, Mayo Clinic College of Medicine and Science.

2020 Welcome Address

Carl Harrington, IWMF Chair of the Board welcomed attendees to the 2020 Virtual Educational Forum and provided some interesting facts and statistics regarding what the IWMF has accomplished over the years, the age ranges and longevity of WM community members and Ed Forum attendees, and the vision for the future for the WM community.

2019

Basic Training for WM’ers

Jeffrey Matous, MD -Colorado Blood Cancer Institute, 2019 Ed Forum
Prepares the newly diagnosed patient to get the most out of the other videos from this Educational Forum and provides a refresher course for veteran WM’ers

The Patient Perspective on Being Newly Diagnosed

Peter DeNardis – IWMF Trustee, 2017 Ed Forum
Provides the patient’s perspective about living with cancer upon diagnosis of WM

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.

The Power of Choice: Current Treatment Options for WM

Edward Stadtmauer, MD – University of Pennsylvania, 2019 Ed Forum
Reviews the diagnostic criteria, manifestations of the disease, International Staging System for prognosis for WM, diagnoses that can be confused with WM, why everyone is not treated at diagnosis, guidelines for initiation of therapy, and therapeutic landscape of WM, including the multiple treatment options for WM, plus new treatments on the horizon, and challenges in providing treatment.

The Revolution in WM Treatment: What’s on the Horizon

Jorge Castillo, MD – Dana Farber Cancer Institute, 2019 Ed Forum
Teaches us about the treatments that are on the horizon, including proteasome inhibitors: ixazomib with dexamethasone and rituximab as primary therapy,  BTK inhibitors:, acalabrutinib, zanubrutinib, BGB-3111, vecabrutinib, venetoclax, combination ibrutinib and venetoclax as frontline therapy, CXCR4 inhibitors: ulocuplumab, ulixertinib, combination of ibrutinib and ulocuplumab for CXCR4WHIM, and anti-CD38 monoclonal antibody: daratumumab.

Rare Complications of WM

Jorge Castillo, MD – Dana Farber Cancer Institute, 2019 Ed Forum
Discusses the following complications and their management: hyperviscosity, cryoglobulins, cold agglutinins, peripheral neuropathy, renal disease, and Bing-Neel syndrome.

Understanding your Blood Tests

Jeffrey Matous, MD -Colorado Blood Cancer Institute, 2019 Ed Forum
Teaches the newly diagnosed patient to understand their blood tests, as well as other tests for WM and provides a refresher course for veteran WM’ers

No video available

A Deep Dive into the Genomics of WM

Zachary Hunter, PhD – Dana-Farber Cancer Institute, 2019 Ed Forum
Teaches the newly diagnosed and veteran patients genetics, genomics, epigenetics, the genomics of WM, and using mutation status to understand responses to ibrutinib. Additionally, Dr. Hunter introduces us to the expression of BCL2 family members in WM, validation of CXCL13 correlation with bone marrow and hemoglobin in WM, the signaling pathways driven by mutated MYD88 in WM, the effect of cytokines that protect clones from ibrutinib, and new drugs in clinical trials (HCK inhibitors and MAPK/ERK inhibitors).

No video available

Cancer and Fatigue

Colleen Erb, MSN, CRNP, ACNP-BC, AOCNP– University of Pennsylvania, 2019 Ed Forum
Reviews cancer-related fatigue relative to quality of life issues, what causes fatigue to worsen, treatable contributing factors, other than disease or chemotherapy, other diseases that can add to fatigue, and what are the general strategies to manage fatigue

No video available

Immunotherapy – Making the Immune System Target WM Cells

Stephen Ansell MD, PhD, Mayo Clinic, Rochester, 2019 Ed Forum
Explains how immunotherapy activates T-cells into killer T-cells and prevents them from being switched off, so that the T-cell has increased ability to target cancer cells. Over time, T-cells can become “exhausted” and switched off with loss of function.  Strategies to block these “switched off” signals with PD1 blockade and CTLA-4 blockade are presented. T-cells in WM are not activated, strategies are presented to activate the T-cell by “waking’ them up by giving them a “poke.” T-cells in WM also do not “lock on” to their targets. Chimeric antigen receptor (CAR) T-cell therapy may give the T-cell a new way to “dock” onto WM cells.

Fact or Fiction: Nutrition and Cancer Myths

Stacy Kennedy, MPH, RD/LDN, CSO – Dana Farber Cancer Institute, 2019 Ed Forum
Helps us understand the latest research on dietary supplements during cancer treatment and interdisciplinary focused integrative therapies for oncology patients (acupuncture, reiki, massage therapy, mindfulness). Provides reliable resources for assisting patients in choosing integrative therapies.

Palliative Care and Supportive Oncology for People Living with WM

Susan McInnes, MD – Cleveland Clinic, Taussig Cancer Center, 2019 Ed Forum
Helps us understand how palliative care can be an added layer of support to address symptoms, quality of life, psychosocial issues, and advance care planning and how this care is available and appropriate at all stages of WM

No video available

Peripheral Neuropathy

Tom Hoffmann, MD – IWMF Trustee, 2019 Ed Forum
Provides an in-depth review of the epidemiology, etiology, common cancers causing peripheral neuropathy, drugs related neuropathies, how neuropathy is evaluated, what tests are ordered, and facts about peripheral neuropathy relative to WM, including available treatments.

No video available

The Financial Side of Cancer (How Do I Afford My Treatment)

Heather Klusaritz PhD, MSW – University of Pennsylvania, 2019 Ed Forum
Discusses what health insurance is, how to navigate your insurance and advocate for yourself, disability options if you can’t work, and where to get more help, such as co-pay assistance.

No video available

Breaking News from the WM Front

Steven Treon, MD, PhD – Dana Farber Cancer Institute, 2019 Ed Forum
Explains why complete responses are so uncommon in WM, even with targeted therapy, what are the WM-centric toxicities with commonly used therapies, how pro-survival signaling of WM cells is driven by mutated MYD88 in WM, how CXCR4 mutations permit ongoing pro-survival signaling of Wm cells by CXCL12 and makes CXCR4 resistant to ibrutinib and the impact of CXCR4 on WM response and progression free survival (PFS). Reviews studies with ibrutinib, venetoclax, a combination of both drugs, zanubrutinib, acalabrutinib, and incorporating other novel treatments to eradicate residual or resistant disease. Also explains what the knowledge gaps are for developing more effective treatments for patients with WM without MYD88 mutations, the knowledge gaps for treating Bing Neel Syndrome, and treatment outcomes of WM-related peripheral neuropathy.

Great Debates in WM

Moderated by Carl Harrington- IWMF President
Rituxan Maintenance vs. No Maintenance
Morton Coleman MD – Weill Cornell Medical College vs. Stephen Ansell MD, PhD – Mayo Clinic, 2019 Ed Forum
Limited Treatment Duration vs. Continuous Pill
Edward Stadtmauer, MD – University of Pennsylvania vs. Jorge Castillo, MD – Dana Farber Cancer Institute, 2019 Ed Forum
The experts debate hot topics in long term treatment decisions for WM

Take Home Messages about WM

Morie Gertz, MD, Mayo Clinic, Rochester, 2019 Ed Forum
Teaches us about the incidence rates of WM, prevalence of IgM MGUS and smoldering WM, how MYD88 and CXCR4 impact outcomes in WM, MYD88 and transformation risk, hyperviscosity and when therapy is required, how WM affects the kidney (including amyloidosis), chemotherapy treatment of WM, how long responses last until new therapy is required, and strategies to monitor and manage adverse events associated with novel therapies for WM

Ask the Doctor Panel 2019

Moderated by Tom Hoffmann, MD – IWMF Trustee, 2019 Ed Forum
Researchers and clinicians answer, and sometimes debate, questions from the audience

No slides available

2018

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

No video available

Making Choices About Your Health with Your Team

Danny van Leeuwen, RN, MPH, 2018 Ed Forum
Presents advice regarding how to approach living with a serious illness and how to enhance the patient experience through quality improvement.

The ABCs of WM

Jeffrey V, Matous MD, Colorado Blood Cancer Institute, 2018 Ed Forum
Prepares the newly diagnosed patient to get the most out of the other videos from this Educational Forum and provides a refresher course for veteran WM’ers

The Patient Perspective on Being Newly Diagnosed

Neil Massoth, PhD – Professor Emeritus, School of Psychology, Fairleigh Dickinson University, 2018 Ed Forum
Provides the patient’s perspective about being newly diagnosed with WM and about living for 20 years with the cancer

No slides available

Welcome Address

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

Current Treatment of WM

Shuo MA, MD, PhD – Northwestern University Feinberg School of Medicine, 2018 Ed Forum
Provides an overview of WM and IgM related complications, as well as an overview of treatment criteria and currently available active agents for WM

Treatments Around the Corner for WM

Jorge Castillo, MD – Dana Farber Cancer Institute, 2018 Ed Forum
Discusses data from clinical trials for potential new treatments, such as ixazomib, dexamethasone, and rituximab as primary therapy, Venetoclax in previously treated WM, BTK inhibitor BGB-3111 in relapsed/refractory B-cell malignancies, Acalabrutinib (ACP-196), Ulocuplumab in CXCR4WHIM patients with WM, and Daratumumab in previously treated patients with WM

Clinical Trials & Why They Are Important

Gwen Nichols, MD – Chief Medical Officer, Leukemia & Lymphoma Society (LLS), 2018 Ed Forum
Explains how all the medicines you take today are only available because patients participated in various stages of clinical trial development, goes into depth on how a drug gets developed and goes through phase I, II, and III clinical trials, why clinical trials take so long and what is being done to speed them up, provides an overview of the LLS Clinical Trials Service Center (CTSC), and the LLS Patient Registry, a “real world” clinical trial

Peripheral Neuropathy

Guy Sherwood, MD – IWMF Vice President for Research, 2018 Ed Forum
Reviews the definition of peripheral neuropathy, signs and symptoms, prevalence, mechanism, anti-neural antigens of IgM, diagnosis, nerve conductions studies, and treatment strategies, including advice from WM’ers with PN in attendance

No video available

Understanding your Blood Tests

Jeffrey V, Matous MD, Colorado Blood Cancer Institute, 2018 Ed Forum
Explains how blood tests are used in patients with WM, what results mean, and which tests are important to track the disease

No video available

Predisposition to WM: Overview & Current Updates

Mary Lou McMaster, MD – National Institutes of Health, 2018 Ed Forum
Presents evidence that the risk for WM depends on a combination of genes, environmental exposures, and possibly lifestyle factors

Unusual Conditions in WM

Morie Gertz, MD, MACP - Mayo Clinic Rochester, 2018 Ed Forum
Discusses amyloidosis, MGUS neuropathy, cold agglutinin, cryoglobulinemia, large cell transformation, central nervous system in WM (Bing Neel), and MGRS (monoclonal gammopathy of renal significance)

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

No video available

IWMF Connect, Social Media & the I-Patient – Virtual Networking with Other WM’ers

Peter DeNardis, IWMF Trustee, 2017 Ed Forum

No video available

Tired of Cancer? What to Do About Cancer- Associated Fatigue

Lisa Wu, PhD – Northwestern University Feinberg School of Medicine, 2018 Ed Forum
Discusses the definition of fatigue vs. cancer-related fatigue, how often it occurs, why it happens, who experiences it, severity, when it occurs, how long it lasts, the impact on usual activities, including emotional, physical, social/familial, and cognitive impact, and interventions for patients on active treatment

No video available

Nutrition, Exercise, & Cancer

Stacy Kennedy, MPH, RD/LDN, CSO – Dana Farber Cancer Institute, 2018 Ed Forum
Teaches the power of nutrition and exercise, how to balance your plate and emphasize the rainbow, reviews symptom management, including nausea, taste, and bowel concerns, recommends super foods and foods to avoid, and reviews fitness benefits during treatment

WM: Genomic & Treatment Advances

Zachary Hunter, PhD, Guang Yang, PhD, Steve Treon, MD, PhD – Dana Farber Cancer Institute, 2018 Ed Forum
Three researchers discuss how MYD88 and CXCR4 mutations are common in WM with MYD88 activating BTK and HCK in WM cells, both targets of ibrutinib. Ibrutinib produces high response rates and durable responses in relapsed and refractory WM. No complete responses. Mutated CXCR4, aberrant IRAK and BCL2 signaling contribute to intrinsic resistance against ibrutinib. Multiple BTK mutations are common with acquired ibrutinib resistance and trigger ERK1/2 survival signaling. Novel strategies to overcome intrinsic and acquired resistance to ibrutinib, including targeting CXCR4, ERK, IRAK, and BCL2 signaling.

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

Ask the Doctor Panel 2018

Guy Sherwood, MD, IWMF Vice President for Research, Moderator, 2018 Ed Forum
Researchers and clinicians answer, and sometimes debate, questions from the audience

No slides available

2017

2017 Phoenix Support Group Leader Workshop Presentation

Marcia Klepac - IWMF Trustee, 2017 Ed Forum

No video available

The ABCs of WM

Jeffrey V, Matous MD, Colorado Blood Cancer Institute, 2018 Ed Forum
Prepares the newly diagnosed patient to get the most out of the other videos from this Educational Forum and provides a refresher course for veteran WM’ers

The Patient Perspective on Being Newly Diagnosed

Peter DeNardis – IWMF Trustee, 2017 Ed Forum
Provides the patient’s perspective about living with cancer upon diagnosis of WM

The Map of Current Treatment Options for WM

Craig Reeder, MD – Mayo Clinic Arizona, 2017 Ed Forum
Reviews indications for therapy, differences in drug classes, side effects of therapy, treatment options for newly diagnosed and relapsed/refractory patients, and discusses the role of stem cell transplant

The Genetic Drivers of WM

Zachary Hunter, PhD – Dana-Farber Cancer Institute, 2017 Ed Forum
Reviews the genetics, epigenetics, genomics of WM (MYD88 L265P and CXCR4 mutations), and the genomic response to treatment options

Meet a Young Investigator

Jonas Paludo, MD – Mayo Clinic Rochester, 2017 Ed Forum
Reviews the clinical presentation and outcomes of young patients with WM

Financial Insurance Issues
Jamie Ledezma, Esq., Cancer Rights Attorney, Triage Cancer, 2017 Ed Forum

No video available

How to Understand Your Blood Tests

Toni Dubeau, RN, NP, Dana Farber Cancer Institute, 2017 Ed Forum

No video available

Welcome Dinner 2017

Meghan Gutierrez Lymphoma Research Foundation, 2017 Ed Forum

No slides available

Immunotherapy – The Newest Treatment Route

Madhav Dhodapkar, MD – Yale University, 2017 Ed Forum
Reviews basic immunology, what makes cancer immunotherapy special, what are the some of the current approaches and existing challenges/emerging approaches

New Insights into the Biology & Therapy of WM

Steven Treon, MD, PhD – Dana-Farber Cancer Institute, 2017 Ed Forum
Discusses manifestations of WM, side effects, genomics, treatment options, upfront treatment and relapsed/refractory treatment approaches

IWMF Connect, Social Media & the I-Patient – Virtual Networking with Other WM’ers

Peter DeNardis, IWMF Trustee, 2017 Ed Forum

No video available

Peripheral Neuropathy

Guy Sherwood, MD - IWMF Vice President for Research, 2017 Ed Forum

No video available

Coping with Cancer-Related Fatigue

Sharene Hollenbach, RN, OCN, Mayo Clinic Arizona, 2017 Ed Forum

No video available

What is so “Special” About a Specialty Pharmacy?

Brenda Hawkes, Diplomat Pharmacy, 2017 Ed Forum

No video available

Clinical Trial News: What New Treatments Are Coming Down the Road?

Edward Libby, MD, Seattle Cancer Care Alliance, 2017 Ed Forum
Discusses current and soon to be open clinical trials for WM

The Patient Perspective on Clinical Trials

Ron Ternoway, Support Group Leader from Nova Scotia, 2017 Ed Forum
Provides the patient’s perspective about living with cancer and participating in clinical trials for WM

Self-Care During Your WM Journey

Toni Dubeau, RN, NP – Dana-Farber Cancer Institute, 2017 Ed Forum
Discusses the value of exercise, supplements, and diet on patient outcomes

Overview of the IWMF-LLS Strategic Research Roadmap – Our Track for the Future

Stephen Ansell, MD, PhD – Mayo Clinic Rochester, 2017 Ed Forum
Provides the IWMF-LLS Strategic Research Roadmap and addresses the uniqueness of WM, its genomics, epigenomics, MYD88 L265P and CXCR4 mutations, treatment options, and survival

The Burning Questions about WM

Morie Gertz, MD, FACP – Mayo Clinic Rochester, 2017 Ed Forum
Raises questions and answers about WM, such as, “Are my kids going to get this? How long will I live? What can I do to live longer?” just to name a few

Ask the Doctor Panel 2017

Guy Sherwood, MD, IWMF Vice President for Research, Moderator 2017 Ed Forum
Researchers and clinicians answer, and sometimes debate, questions from the audience

No slides available

2017 IWMF Educational Forum Posters

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

No video available

2016

Basics of WM for the Newly Diagnosed/First Timers Session

Jeffrey Matous, MD, & Megan Andersen, NP-C - Colorado Blood Cancer Institute, 2016 Ed Forum
Prepares the newly diagnosed to get the most out of the other videos and provides a refresher course for veteran WM’ers

IWMF Research Roadmap Overview & Bone Marrow Tumor Microenvironment

Stephen Ansell, MD, PhD - Mayo Clinic, Rochester, 2016 Ed Forum
Covers what is unique about WM, as well as, genomics, epigenomics, MYD88 L265P and CXCR4 mutations, survival, and treatment options

Frontline Treatment Options for WM

Jorge Castillo, MD - Dana-Farber Cancer Institute, 2016 Ed Forum
Reviews the manifestations of WM disease, NCCN guidelines for initiation of treatment for WM, single agent treatments, combination therapies, maintenance, and new directions, including frontier clinical trials at Dana Farber Cancer Institute

Treatment Options for Relapsed/Refractory WM

Jeffrey Matous, MD – Colorado Blood Cancer Institute, 2016 Ed Forum
Discusses the definition of relapse and how to recognize it, approaches treatment from a doctor’s perspective, goals of retreatment, how aggressive can and should we be with treatment, and treatment choices for relapsed/refractory WM

No video available

IWMF President’s Address

Carl Harrington, IWMF, President, 2016 Ed Forum

No video available

Ali Handal Keynote Performance

Musical Entertainment at Welcome Dinner, 2016 Ed Forum

WM and the Eye

Maureen Hanley, OD, New England College of Optometry, 2016 Ed Forum
Provides an insight into normal aging versus WM related issues, such as conjunctival pallor as simple screening for anemia, subconjunctival hemorrhages and plasmapheresis, dry eye, corneal changes with WM, cataracts, retinal changes with anemia and WM, maculopathy, even if IgM is not high, and increased risk of glaucoma

No video available

Cellular Immunotherapy for Lymphoid Cancers

Edward Stadtmauer, MD, University of Pennsylvania, 2016 Ed Forum
Covers the manifestations of WM, immunologic approaches to overcome self-tolerance in lymphoma, rationale for cellular immunotherapy in lymphoma, adoptive T-cell therapy, second generation of CAR for B-cell malignancies, overview of activated/engineered T-cell therapy, CD19-targeted CAR T-cells for B-cell malignancies, phase I trial for CLL, results with diffuse large B-cell lymphoma, follicular lymphoma and adverse events, pilot study of CART19 in multiple myeloma, CART-BCMA cells for multiple myeloma, and potential strategies to improve CART therapy in lymphoma

Cancer Survivorship

Karen Meneses, PhD, University of Alabama at Birmingham, 2016 Ed Forum
Provides stories of survivorship in the US and specifically among survivors of WM, statistics of survivorship in the US, common vs. rare cancers (such a WM), increased risk of late effects, changes in quality of life, and general tips on survivorship

No video available

Clinical Trials

Megan Andersen, NP-C -Colorado Blood Cancer Institute, 2016 Ed Forum

No video available

Nutrition, Exercise, & Cancer

Stacy Kennedy, RD – Dana-Farber Cancer Institute, 2016 Ed Forum

No video available

Peripheral Neuropathy

Guy Sherwood, MD - IWMF Vice President for Research, 2016 Ed Forum

No video available

MYD88, CXCR4, & the Molecular Basis of WM

Zachary Hunter, PhD – Dana Farber Cancer Institute, 2016 Ed Forum
Reviews genetics, epigenetics and the epigenome, including the genomics of WM

No video available

An Overview of Epigenetics (Why understanding the epigenome will change the practice of medicine)

Ari Melnick, MD – Weill Cornell Medical College, 2016 Ed Forum
Provides an understanding of genomics and explains the genome/computer operating system vs. epigenome/computer programs metaphor. Reviews epigenetics as a blueprint for cancer cells and how epigenetics and understanding the mechanism yields therapies for turning DLBCL cells into plasma cells

No video available

Translating Genomic Findings into New Treatment Opportunities for WM

Steven Treon, MD, PhD – Dana-Farber Cancer Institute, 2016 Ed Forum
Reviews WM-centric toxicities with commonly used therapies and discusses new directions in WM based on the MYD88 L265P somatic mutation in WM

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

No slides available

Global View of Indolent Lymphomas & WM (WM: An Exciting Upbeat Story)

Morton Coleman, MD – Weill Cornell Medical College, 2016 Ed Forum
Discusses the frequency of various lymphoma subtypes in adults, with emphasis on WM and cancer drug development and reviews the signaling pathways in WM, drugs that inhibit WM cell survival and discusses the challenges of combining drugs and limiting side effects

Ask the Doctor Panel 2016

Robert Kyle, MD – Mayo Clinic Rochester, Moderator, 2016 Ed Forum
Noted researchers and clinicians answer and sometimes debate questions from the audience

No slides available

2015

IWMF Welcome Address

Carl Harrington - IWMF President, 2015 Ed Forum

No video available

Maps of Where IWMF Members Are

Carl Harrington - IWMF President, 2015 Ed Forum

No video available

I’ve Been Diagnosed with WM – What Happens Now?

Joseph Mikhael, MD, MEd - Mayo Clinic, Arizona, 2015 Ed Forum
Reviews the basics of Waldenstrom’s Macroglobulinemia and how it is distinguished from myeloma and lymphoma.
Discusses the importance of an accurate diagnosis in WM.
Highlights the critical features to establish the need to treat WM.
Outlines the overall approach to therapy of WM.
Empowers you for the rest of this conference and your disease “career.”

Integrative Oncology-Blending the Best of Both Worlds

Claudia Harsh, MD - Baylor Sammons Cancer Center, Cvetko Integrative Medicine Program, 2015 Ed Forum
Explores tools to balance emotional, mental, physical and spiritual health during and after cancer treatment. Compares Western Medicine “reactive” paradigm of healing and the Eastern Medicine “proactive” paradigm. Examines some of the evidence based and safety data for integrative therapies

No video available

IWMF Member Services – History & Progress

Carl Harrington - IWMF President, 2015 Ed Forum

No video available

IWMF Research – History & Progress

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

No video available

I Need Treatment – First-Line Treatments & Side Effects

Larry Anderson, MD, PhD - University of Texas Southwestern Medical Center, 2015 Ed Forum
Covers diagnosis of WM (aka LPL) and treatment options

My WM is Back–Relapsed/Refractory Treatments

Sheeba Thomas, MD - MD Anderson Cancer Center, 2015 Ed Forum
Explores diagnosis, recommendations for treating relapsed WM, clinical trials, and future therapies

IWMF President’s Address

Carl Harrington, IWMF, President, 2016 Ed Forum

No video available

IWMF Keynote Address

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

No video available

Judith May Story

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

No video available

The Garden Talk

Dr. Morie Gertz - Mayo Clinic, Rochester, 2015 Ed Forum
An informative analogy of the person as a garden and the weeds as cancer cells with suggestions to prevent growth of cancer cells.

No slides available

Dr. Jan Waldenstrom – our Patron Saint

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

No video available

How B-cells Work and Talk to Each Other

Stephen Ansell, MD, PhD - Mayo Clinic, Rochester, 2015 Ed Forum
Reviews how lymphocytes become plasma cells and then produce antibodies and activate the B-cell receptor pathway, the Toll-like receptor pathway, causes of increased production of IgM in WM, cytokines, chemokines, receptor/ligand interactions and cell communications

Harnessing Killer T-Cells

Julie Nielsen, PhD - Deeley Research Centre, British Columbia Cancer Foundation, 2015 Ed Forum
Provides an overview of the immune response to cancer, what T cells are and how they work, immune-based therapies for cancer, using T cells to target patient-specific mutations, targeting MYD88 with T cells, CD19 Car T cells, and mutations in WM

No video available

Familial WM

Mary L. McMaster, MD - National Institutes of Health, 2015 Ed Forum
Explores why WM sometimes clusters in families, is WM in families different from non-familial WM, why some people are susceptible to WM, factors that increase risk for WM, genetics, and environmental lifestyle

Etudes Sur les Familles de Malades Waldenstrom (en français)

Genomic Landscape of WM (Making Sense of MYD88, CXCR4 and the Genetics of WM

Zachary Hunter, PhD - Dana Farber Cancer Institute, 2015 Ed Forum
Discusses genetics, family inheritance, the genome, transcriptome, proteome, epigenome, and the genome of WM

No video available

Targeted Therapies for WM

Steven Treon, MD, PhD - Dana Farber Cancer Institute, 2015 Ed Forum
Explains the WM-centric toxicities with commonly used therapies and new treatment directions in WM, including MYD88 L265P mutation and the MYD88 L265P signal pathway, Ibrutinib studies and its effect on side effects and survival, WHIM-like CXCR4 C-tail mutations in WM, unmutated MYD88 disease in WM, Idelalisib, clinical trial of ABT-199 (BCL2 inhibitor) in relapsed/refractory WM, resistance to Ibrutinib, and Ixazomib clinical trial

Newly Diagnosed

Peter DeNardis - IWMF Trustee & Carl Harrington - IWMF President, 2015 Ed Forum

No video available

The Strategic Research Roadmap for WM

Lee Greenberger, PhD - The Leukemia and Lymphoma Society, 2015 Ed Forum
Covers who is LLS, what are their interests in WM, what have they funded, what is the road ahead, and how will we fund the future

No video available

Ask the Doctor Panel 2015

Robert Kyle, MD – Mayo Clinic, Rochester, Moderator, 2015 Ed Forum
Noted researchers and clinicians answer and sometimes debate questions from the audience

No slides available

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.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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.

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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.

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