** Check back soon for the 2020 Summit agenda! ** 

2019 Advocate Leadership Summit Program

Day 1 – Saturday, April 27, 2019

12:45 pm – 2:45 pm                                                                                                           

Project LEAD® Workshop: Awakening Dormant Tumor Cells

This LEAD® Grads-only session will highlight the relationship between chronic inflammation and the metastatic recurrence of breast cancer. In particular, this session will explore the role of neutrophils, a specific type of immune cell, in the awakening of dormant cancer cells. Neutrophils can form neutrophil extracellular traps (NETs) as part of the body's reaction to inflammation. By targeting NETs, we may be able to prevent cancer recurrence. (For Project LEAD® graduates only)


Mikala Egeblad, PhD, Cold Spring Harbor Laboratory


Annette Bar Cohen, NBCC Consultant


3:00 pm – 3:15 pm                                                                                                                                                              

Opening of Advocate Leadership Summit

Welcome and Summit Dedications


3:15 pm – 3:45 pm                                                                                                                                                             

President’s Plenary

3:45 pm – 5:15 pm                                                                         

Plenary Session (1): The Breast Cancer Treatment Landscape – What’s on the horizon?

Over the past decade, there have been enormous changes in the thoughts around how to effectively treat breast cancer. In addition, the tumor microenvironment is increasingly recognized to play a significant role in tumorigenesis. This session will discuss some of the biggest changes in our thinking about how to treat breast cancer, including novel immunotherapy strategies to cell-cycle checkpoint inhibitors and more.


Stephanie Goff, MD, National Cancer Institute
Sasha Stanton, MD, PhD, Assistant Profession, UW Medicine, Acting instructor in Breast Oncology at the University of Washington/Seattle Cancer Care Alliance
Nicholas P. McAndrew, MD, MSCE, Clinical Instructor, Division of Hematology/Oncology, UCLA David Geffen School of Medicine
Joy Simha, NBCC Board of Directors, Young Survival Coalition


Marylinn Minor, NBCC Team Leader, VA, NBCC Breast Cancer Advocate

5:30 pm – 6:00 pm             

Leadership Summit Group Photograph                                 

6:15 pm – 7:15 pm

Finding Your Niche: A Welcome Orientation for New Leaders

Led by NBCC board members and advocates, this session will help first-time attendees navigate

the conference program and get the very most out of the many opportunities presented at the conference. Special attention will be given to key plenary sessions, must-attend workshops, lobby day and special events. 


Jan Simon, NBCC Breast Cancer Advocate, Wisconsin Breast Cancer Coalition
Rose Marie Sitko,
NBCC Board of Directors, Michigan Breast Cancer Coalition
Kristin Teig Torres,
NBCC Breast Cancer Advocate, Cedar Valley Cancer Committee: Beyond Pink  Team


Day 2 - Sunday, April 28, 2019 


8:00 am – 8:15 am                                                                                                                                                              



8:15 am – 9:45 am                                                                                                                                                              

Plenary Session (2): Conflicts of Interest and their Impact on Progress Toward Ending Breast Cancer

This panel will discuss what constitutes a conflict of interest and how pervasive conflicts are in the field of breast cancer research. It will also explore the factors and perverse incentives behind these conflicts and their impact on efforts to end breast cancer. The key question to be addressed is how advocates can play a role in changing the system.  


Matthew McCoy, PhD, Assistant Professor, Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania
Aaron P. Mitchell, MD, MPH, Medical Oncologist, Memorial Sloan Kettering Cancer Center (MSK); Assistant Attending, Department of Epidemiology and Biostatistics, MSK
Judi Hirshfield-Bartek, NBCC Board of Directors, Dr. Susan Love Research Foundation 


Vernal Branch, NBCC Breast Cancer Advocate

9:45 am – 10:00 am



10:00 am – 11:00 am                                         



Workshop 1 – Reading Beyond the Hype In News Media and Scientific Literature Claims Regarding Cancer Treatments.

Recent news releases have given a lot of hope to lots of women (and some men) about ‘landmark’ study results. Unfortunately, these claims too often turn out to be more spin than hard facts, with results written in a way so as to present the results in a favorable light. Learn about strategies to read beyond the hype.


Gary Schwitzer, Publisher, HealthNewsReview.org, Adjunct Associate Professor, University of Minnesota School of Public Health


Ann Fonfa, NBCC Board of Directors, Annie Appleseed Project (Session 1)
Donna Duncan, NBCC Board of Directors, Linda Creed Breast Cancer (Session 2)


Workshop 2 – Clinical Trial Design and Outcomes

Advocates are increasingly being involved in clinical trials as key partners throughout the research process. This session will provide a refresher on trial design especially valuable to NBCC advocates involved in NBCC’s Clinical Trials Project. Key characteristics of trial design such as randomization, sample size calculations, intention to treat analysis, minimizing bias, and endpoints will be covered, along with issues regarding study design and accrual, and the roles that advocates play.


Lynne Howie, MD, MA, Oncologist, formerly a Medical Officer in the Division of Oncology Products, Center for Drug Evaluation and Research at the U.S. Food and Drug Administration             
Carol Matyka, NBCC Board of Directors, CARE Advocates Network 


Nancy Ryan, NBCC Team Leader, NH, NBCC Advocate (Session 1)
Karen Poliseno NBCC Team Leader, MA, NBCC Advocate (Session 2)     

Workshop 3Value and Transparency in Cancer Drug Development 

Cancer costs are rising quickly, and cancer drugs are the fastest-growing component of these costs. New cancer drugs cost an average of $10,000 per month, and some exceed $30,000 per month. Many patients want, but often don’t receive, clear information about the benefits, risks, and costs of treatment options. Even well-insured patients are often surprised by, and unprepared for, the high out-of-pocket costs associated with some drugs. Hear about the issues and explore the role advocates should be playing to improve value and transparency.   


Aaron N. Winn, PhD, Assistant Professor, Pharmacy Administration, Department of Clinical Sciences, Medical College of Wisconsin


Beth Emery, NBCC Board of Directors Alternate; Alamo Breast Cancer Foundation (Session 1)
Kim Tankersley, NBCC Team Leader, CA, NBCC Breast Cancer Advocate (Session 2)


Workshop 4 Metastatic Breast Cancer and the Tumor Microenvironment

Get the latest update on the research about how microenvironments within distant tissues regulate dormancy and growth of disseminated tumor cells.  


Cyrus Ghajar, PhD, Director, Laboratory for the Study of Metastatic Microenvironments (LSM2), Fred Hutchinson Cancer Research Center  


Christine Norton, NBCC Board of Directors, Minnesota Breast Cancer Coalition

11:00 am – 11:15 am


11:15 am – 12:15 pm                                                                        


Repeat of above workshops


12:30 pm – 2:00 pm           

Membership Luncheon and Armchair Discussion


2:00 pm – 2:15 pm



2:15 pm – 3:45 pm

Plenary (3): Ten Years Into the ARTEMIS Project® What have we accomplished and where do we go next? 


Keith Knutson, PhD, Professor of Immunology, Department of Immunology; Director, Mayo Clinic Florida Discovery and Translation Labs, Cancer Research Program; Director, Mayo Clinic Cancer Center Immunology and Immunotherapy Program
Cyrus Ghajar, PhD,
Director, Laboratory for the Study of Metastatic Microenvironments (LSM2), Fred Hutchinson Cancer Research Center
Alana Welm, PhD, Associate Professor in the Department of Oncological Sciences at the University of Utah, an Investigator at the Huntsman Cancer Institute, and Co-Leader of the Cell Response and Regulation Program at HCI
Pat Haugen, NBCC Team Leader, MN, NBCC Breat Cancer Advocate


Michele Rakoff, NBCC Board of Directors, Breast Cancer Care and Research Fund 


3:45 pm – 4:00 pm



4:00 pm – 5:30 pm                                                                             

Plenary (4): Advocates in Science – Advocacy Organizations Leading the Charge 


Norman Scherzer, Executive Director, The Life Raft Group  
Mark Harrington, Executive Director, Treatment Action Group 
Elizabeth Frank, Patient Advocate, Breast Cancer Advocacy Group, Dana Farber Cancer Institute


Michele Atlan, NBCC Board of Directors Alternate, Breast Cancer Care and Research Fund                                                                                           

5:30 pm – 6:15 pm             

Advocate/Speaker Meet Up     

6:30 pm – 7:30 pm

Tribute to the Life and Leadership of Marlene McCarthy     

Day 3 - Monday, April 29, 2019


7:00 am – 8:00 am 

Team Leader Breakfast


8:00 am – 9:00 am

Special Session: NATALEE Clinical Trial Update  


Nicholas P. McAndrew, MD, MSCE, Clinical Instructor, Division of Hematology/Oncology, UCLA David Geffen School of Medicine  


9:15 am – 9:30 am                                                                                                                                                           



9:30 am – 11:00 am

Plenary (5): The Politics of Healthcare


Christine Carpenter, NBCC Board of Directors; Cedar Valley Cancer Committee: Beyond Pink Team
Chris Jennings, Jennings Policy Strategies, Inc.
Jill Normington, Partner, Normington, Petts & Assoc.
Jamila Taylor, Senior Fellow, Director of Women's Health and Rights, Center for American Progress 


Joanne Howes, Women's Health Consultant

11:00 am – 11:15 am



11:15 am – 12:15 pm



Workshop 1 Disparities in Breast Cancer

Racial disparities in breast cancer mortality have been widely documented and persist despite widespread screening and advances in treatment. This begs the question about the role of biological, social, and health system determinants of poor outcomes. What factors underlie these disparities and what actions need to be taken if we are to end this disease? What role can advocates need to play to help eliminate these persistent disparities?


Otis W. Brawley, MD, Bloomberg Distinguished Professor, Johns Hopkins Bloomberg School of Public Health and the Johns Hopkins Kimmel Cancer Center


Valencia Robinson, NBCC Breast Cancer Advocate (Session 1) 
Shirley Brown, NBCC Team Leader, CA, NBCC Breast Cancer Advocate (Session 2)


Workshop 2 – Grassroots Advocacy – Building, Engaging, and Mobilizing Your Network

Learn time-tested strategies used by two of NBCC’s Grassroots Advocacy Groups for building and sustaining their advocacy networks. Discuss techniques for engaging and mobilizing your advocacy network to push research or public policy agendas. And brainstorm with peers immediate actions/steps you plan to take home to address barriers and challenges you currently face in building and sustaining your network.


Iowa Advocates - Lori Seawel, Kristin Teig Torres
Maine Advocates - Laurel Bezanson, Bethany Zell


Jerry Worden, NBCC Board of Directors, Alamo Breast Cancer Foundation (Session 1)
Valerie Fraser, NBCC Breast Cancer Advocate (Session 2)


Workshop 3 –Informed Consent in Clinical Research

Informed consent process is the cornerstone of ethics in clinical research. Obtaining informed consent from patients participating in clinical research is an important legal and ethical component for clinical trial researchers. And while obtaining informed consent is vital, its effectiveness and validity are often questionable. Issues related to understanding, comprehension, competence, and voluntariness of clinical trial participants may adversely affect the informed consent process. This session will explore keys issues that challenge meaningful consent and offer strategies for Advocates involved on IRBs and/or clinical trial review processes on what to look for when reviewing consent forms.                         


Andrea Denicoff, MS, RN, Head, NCTN Clinical Trials Operations, Scientific Liaison, Patient Reported Outcomes, Clinical Investigations Branch, CTEP, DCTD, NCI
Pat Haugen, NBCC Breast Cancer Advocate  


Mary Lynn Faunda Donovan, NBCC Team Leader, MO, NBCC Breast Cancer Advocate (Session 1)
Leni Rayburn NBCC Team Leader, NY, NBCC Breast Cancer Advocate (Session 2)



Workshop 4 Vaccines for Breast Cancer – Understanding the Science

Get the latest update on the vaccine research for the treatment of breast cancer.                            


H. Kim Lyerly, MD, George Barth Geller Professor, Professor of Surgery, Immunology, and Pathology Duke University School of Medicine 


Caroline Abi-Khattar, NBCC Board of Directors Alternate, Young Survival Coalition (Session 1)
Judy Perkins, NBCC Team Leader, FL, NBCC Breast Cancer Advocate (Session 2)



12:15 pm – 1:45 pm

Lunch and Guest Presentation


Representative Lucy McBath, Representing the 6th District of Georgia


Fran Visco, JD, President, NBCC


2:00 pm – 3:00 pm             


Repeat of the above workshops.


3:00 pm – 3:15 pm



3:15 pm 4:45 pm



Fran Visco, JD, President, NBCC
Jennifer Berzok, NBCC Government Relations Consultant                


4:45 pm - 5:45 pm                                                                                                                    



5:45 pm – 6:00 pm



6:30 pm – 9:30 pm                                                                                   



Day 4 - Tuesday, April 30, 2019

Annual Lobby Day


7:00am – 8:00am

Location: Studio D


NBCC has arranged for a valet service to receive and transport luggage to the ROA Building. Attendees departing Washington from Capitol Hill who need their luggage transported to the ROA Building should take it to Studio D. If you will be departing from Capitol Hill and need your luggage before 12:30pm, you must transport your luggage.


7:30am & 8:00am

Renaissance Arlington Capital View Hotel Lobby Entrance


Starting at 7:30am, buses will take Lobby Day partic­ipants from the hotel to Capitol Hill. The Capitol Hill drop-off location is on the southeast side of the US Capitol at Garfield Circle. NBCC’s base of operations for the entire Lobby Day—8:30am to 5:30pm will be the Reserve Officers Association (ROA) Building. Continental breakfast and lunch will be available.


9:00am – 5:30pm

Capitol Hill


NBCC advocates meet with Members of Congress!


12:30pm – 5:30pm


Attendees who leave their luggage with the NBCC valet service at the hotel will have their items transported to the ROA Building. You must pick up your luggage by 5:30pm.



Peace Circle


Bus will depart from Peace Circle