Agenda & Speakers

Wednesday, November 12, 2014
Time Session
4:00 PM 8:00 PM Registration/Information
4:00 PM 8:00 PM Poster and Hub Setup
6:00 PM 7:00 PM Tribute Reception – Onsite
Thursday, November 13, 2014
7:00 AM 5:00 PM Registration/Information
7:30 AM 8:00 AM Light Breakfast in the Hub and Research Poster Preview
8:00 AM 8:30 AM Critical Mass Welcome and Update
8:30 AM 915 AM Sequencing for the Cure: Genomics Research and Targeted Cancer Treatment with Lukas Wartman, MD
9:15 AM 9:45 AM Research Poster Reception
9:45 AM 10:45 AM Genomics and the AYA Movement with Deborah Morsini, MD, MSW and Barbara Gitlitz, MD
10:45 AM 11:45 AM Interactive Breakouts on Research, Evaluation and Clinical Trials

Re-envisioning Research and Evaluation: Everyone has a stake in this game

Big Data: Discussing the CM Registry and your Data Collaboration Projects (Attendance for this session has been pre-arranged.)

11:45 AM 12:45 PM Networking Lunch – Sit with attendees in your field or make your own mix
12:45 PM 2:00 PM Oral Abstract Presentation and Discussion sessions -See Abstract roster for complete listings

Research Focus: Lang, Morosini, Sanford, and Barosh

Outreach and Connectivity Focus: Rowe, Fasciano, Hanson, and Lamb

Economics, Resarch and Outreach: Drake, Rosenberg, Goldfarb, Zeitler

2:00 PM 2:30 PM In the Hub – Networking and Office hours
2:30 PM 4:00 PM Understanding the Personal Economics of a Diagnosis, Geri Guy, PhD, Sam Watson, MBA, MonicaBryant, Esq.
4:00 PM 5:00 PM Interactive Breakouts on the Economics of Cancer

Navigating the Haystack: Finding Help on the Journey

Health Care Reform: How it’s actually working

Economic Research In AYA Cancer: Leveraging The Data To Tell Your Story

5:00 PM 5:15 PM Thursday Round-up
5:15 PM 5:30 PM Exciting announcement
6:30 PM 8:30 PM Group Networking Event — Offsite
Friday, November 14, 2014
7:30 AM 8:00 AM Light Breakfast in the Hub
8:00 AM 8:30 AM Welcome Back and Steven G AYA Cancer Research Fund Awards
8:30 AM 9:30 AM AYA Survivor, Advocate and Activist, Kate Houghton
9:30 AM 10:00 AM Local Spotlight: Denver
10:00 AM 11:30 AM Operating In the Culture to Engage the Millennial Audience with Catie Miller: Plenary and Small GroupDiscussions
11:30 AM 12:30 PM Brunch and Closing

Session Descriptions

Lukas Wartman, MD of The Genome Institute will present “What Cancer Taught Me.” As a physician who was diagnosed with leukemia, Dr. Wartman will share his own survivor story and his work in genomics research. The importance of research and the role research plays in his life personally and professionally will be discussed. He will also discuss how his own cancer experience has influenced his career.
Deborah Morosini, MD, MSW of Foundation Medicine will review the various techniques used to perform genomic analyses of tumors, including focused panels, whole exome, whole genome, and whole transcriptome sequencing. Examples of findings in AYA tumors will be reported.

Barbara Gitlitz, MD of Norris Comprehensive Cancer Center will describe a proof-of-principle study launched in 2014, the Genomics of Young Lung Cancer study. The Addario Lung Cancer Medical Institute, a patient-centric, international research consortium and partner of the Bonnie J. Addario Lung Cancer Foundation, is facilitating this first-of-its-kind, multi-institutional, prospective genomic study in order to identify new genome-defined subtypes of lung cancer and accelerate delivery of more effective targeted therapies.

Participants are invited to consider their stakes in research and evaluation, including how research is defined, what makes research “AYA research”, the power of program evaluation and how existing clinical and programmatic information may be a goldmine of data. Participants will engage in small group discussions, the development of a checklist for all Critical Mass constituents and an individual “re-envision” for identifying and acting on their stakes in research.
This session invites participants who are engaged in designing or implementing multi-institutional AYA research projects to describe their activities and to coordinate efforts. The goal of this session is to ensure data elements and data structures across these efforts are coordinated to best allow for cross-study comparisons or collaborations in the future.
Gery Guy (CDC), Monica Bryant (Triage Cancer) and Samantha Watson (The SAMFund) will explore the financial impact of cancer on AYAs through multiple lenses. Dr. Guy will offer a macro-level analysis based on his work regarding the economic burden of cancer to AYAs, specifically exploring the loss of productivity and missed opportunity. Ms. Bryant will present an overview of how health insurance status is directly tied to the economic health of AYAs, and the economic benefit and cost of health insurance for AYAs. Ms. Watson will discuss the everyday implications of these challenges on AYAs and how financial stress can preclude AYAs from moving forward with their lives after a cancer diagnosis.
Sam Watson of the SamFund and Erine Grey of Aunt Bertha will lead this interactive workshop and discussion about the 10 major financial issues AYAs face and strategies for addressing them. A brainstorm session will explore these financial challenges and inform a checklist for providers of what to ask and what every provider can do.
Monica Bryant, Esq. will discuss existing/ongoing challenges with implementation, state specific information, and issues with enrollment in marketplaces. She will also describe places where Critical Mass constituents can have an impact (e.g., legislative advocacy, tell your story, education, etc.), and engage participants in a small group exercise. Each group will be provided a scenario in which to discuss health insurance options and communication between healthcare team and patient.
Geri Guy, PhD and Robin Yabroff, PhD will lead this breakout session focused on the role and importance of economics research in the AYA movement, how these data can be leveraged to further the movement and support AYA services, and how to connect the story of the research to your program. There will be discussion, exploration and learning in this highly interactive session.
Catie Miller from the Intelligence Group will describe the work of Noise and the Intelligence Group as the leading research-based consumer insight company focused on youth, why they are here, and define what it means to “operate in the culture” versus operating in the category. She will provide a millennial audience overview and context about the Gen Y mindset and worldview. Ms Miller will explore the high-level theme of ‘venture consumers,’ articulating the shift in relationships between Millennials and the brands/organizations with whom they interact and invest in. She will also give an introduction to the “Popscape,” including an overview of today’s pop culture landscape and the myriad cultural forces that are informing Millennials’ approach to everything from consumption to self-expression. These topics and their specific application to healthcare and the cancer experience will also be explored in small group discussions.

2014 Speakers

Monica Fawzy Bryant, Esq.

Cancer Rights Attorney, COO, Triage Cancer

Monica Fawzy Bryant is a cancer rights attorney, speaker, and author, dedicated to improving access to and availability of quality information on cancer survivorship issues. Ms. Bryant is the co-founder and Chief Operating Officer for Triage Cancer a national nonprofit organization connecting people to cancer survivorship information through a national Speakers Bureau, educational events, and online tools. Throughout her career, Ms. Bryant has provided hundreds of educational seminars, written articles and blogs, and appeared on television and radio shows discussing cancer-related legal issues like insurance access and employment rights. Additionally, Ms. Bryant is an Adjunct Law Professor at John Marshall School of Law in Chicago, teaching a class on Cancer Rights.

Barbara J. Gitlitz, MD

Associate Professor of Clinical Medicine Keck School of Medicine of USC

After graduating from the State University of New York Stony Brook campus, Dr. Gitlitz moved out west to California. After completing a fellowship in Hematology Oncology and Translational Investigation at UCLA, she stayed on as an Assistant Professor. Much of her early clinical-translational work involved cancer immunotherapy including one of the first trials of a Dendritic Cell Vaccine for patients with kidney cancer. She then joined the Keck School of Medicine of USC as an Associate Professor to spearhead the USC oncology effort in lung cancer and head and neck cancer. Her most rewarding part of working at USC is being a member of multidisciplinary treatment teams; where medical oncologists, surgeons, radiation oncologists and other specialists can collaborate together on the best, individualized treatment plan for a patient. Her dedicated, compassionate clinical care has been noticed by the community as she has been consistently nominated to the list of Los Angeles Magazine Super Doctors, Pasadena Magazine Top Doctors, and US News Top Doctors. She has received research grants from the American Cancer Society, the National Institute of Health and STOP cancer. Currently she is a member of the Stand Up 2 Cancer Epigenetics Dream Team where she will bring novel trials to treat cancer with combinations of immunotherapy and therapy to awaken important genes that are ‘turned off’ by growing cancers. Dr. Gitlitz has a passion for working with scientists seeking ways to personalize therapy and bring novel drugs (clinical trials) to treat her patients. She believes that each person’s cancer may have unique molecular/genomic features to help guide the best treatment plan. Dr. Gitlitz is an accomplished author and has numerous articles published in peer reviewed cancer journals and she has written numerous book chapters. She has been invited to lecture at cancer conferences all across the United States and internationally.

Erine Gray

Founder/CEO, Aunt Bertha; 2014 TED Fellow

Erine has been working on business and technology consulting projects for more than 12 years.

His current company (Aunt Bertha) is making it easy for people to find food, health, housing and education programs. Aunt Bertha’s mission is to make human service program information more accessible to both people and programs.

Prior to founding Aunt Bertha, he directed more than 60 employees within a project responsible for administering the application process for the Texas Health and Human Services Commission. He delivered more than 40 software and operational improvement projects that saved the Texas Health and Human Services Commission (HHSC) more than $5 million dollars per year in operating expenses.

Gery P. Guy Jr., PhD, MPH

Division of Cancer Prevention and Control’s Epidemiology and Applied Research Branch Centers for Disease Control

Gery P. Guy Jr., PhD, MPH, is a health economist in the Division of Cancer Prevention and Control’s Epidemiology and Applied Research Branch. Dr. Guy’s areas of research include health insurance, health care access and utilization, cost of illness, and cost effectiveness. Dr. Guy has led research projects examining the economic burden of skin cancer, indoor tanning in the United States, the economic burden of cancer survivorship, and the costs and cost-effectiveness of colorectal cancer screening.

Dr. Guy received his undergraduate degree from the University of Rochester, a master of public health in health policy from the Rollins School of Public Health at Emory University, and a doctorate in health services research and health policy with a concentration in economics from Emory University. In 2013, he completed a two-year postdoctoral fellowship in Prevention Effectiveness at CDC. He is a recipient of the CDC Steven M. Teutsch Prevention Effectiveness Fellowship Outstanding Fellow Award.

Kate Houghton

Kate Yglesias Houghton has spent her career working as a Democratic staff member for elected officials and surrogates as well as developing strategic outreach programming and opportunities for Democratic leaders and activists working to engage women voters. Kate is also the President and a founding member of the Congressional Women’s Softball Game, a non-profit charity event which has raised more than $500,000 since 2009 for young women battling breast cancer and features a bi-partisan, bi-cameral team of female Members of Congress against women of the DC press corp. In 2012, Kate was diagnosed with acute myeloid leukemia and was treated at Johns Hopkins University in Baltimore, MD. She is currently cancer-free and maintains a quarterly follow up schedule with her oncologist. Kate, a native of Miami, FL, resides in Washington, DC with her husband Vince. She has a B.A. in Political Science from Florida International University and a M.A. in Public Policy from George Mason University.

Catie Miller

Director of Strategy, Noise

As Noise’s Director of Strategy, Catie Miller leads business development and strategy efforts for clients including Unilever, Limited Brands, Viacom, Adidas, Red Bull, and more. Prior to Noise, Catie ran corporate partnerships for charity: water, a NYC-based nonprofit dedicated to bringing clean, safe drinking water to the 800 million people living without it. Between her work at charity: water and with prior, she’s had the opportunity to work with brands including TOMS, W Hotels, Microsoft, Burberry, L’Oreal, and more, and continues to draw upon this nonprofit experience to help clients create strategic partnerships and brand activations that are both on target and socially-minded.

Deborah Morosini, MD, MSW

Vice President, Clinical Development Foundation Medicine

Dr. Morosini joined Foundation Medicine as vice president of clinical development in 2013, bringing expertise in oncology drug development, clinical genomics and insightful philanthropic activism. Since joining FMI, she has developed a niche specialty in the genomics of Adolescent and young adults (AYA) cancer. Prior to joining Foundation Medicine, Dr. Morosini founded and led the molecular pathology group at Astrazeneca Pharmaceuticals in the division of Oncology Translational Science, where she helped develop and implement biomarker strategies for biomarker driven trials. Prior to Astrazeneca, Dr. Morosini served as director of pathology for Cytomyx (formerly Ardais Corporation), a clinical genomics biotechnology company specializing in the acquisition, evaluation and characterization of ethically acquired human tissue.

Dr. Morosini is a passionate activist and seasoned keynote speaker. Inspired by her late sister and brother in law, Christopher and Dana Reeve, she has devoted her energies to raising awareness and research dollars for cancer research and early detection. She has been a featured spokesperson for numerous non-profit fundraising and government events in oncology and has provided expert commentary for national television and radio broadcasts, including NBC, ABC, CNN and FOX News.

Dr. Morosini earned her BA in English from Mount Holyoke College and her MSW from NYU Graduate School of Social Work. After completing post BA pre-medical studies at Columbia University, she received her MD from Boston University School of Medicine and completed a pathology residency at Boston Medical Center, where she was chief resident. She currently serves on the Board of Directors for the National Comprehensive Cancer Network Foundation, the NPAF Scientific Advisory board, Target Cancer, the NHGRI council, and the Cancer Support Community: Central New Jersey.

Lukas D. Wartman, MD

Assistant Professor of Medicine, Division of Oncology, Section of Stem Cell Biology, The Genome Institute at Washington University

Assistant Professor in the Section of Stem Cell Biology in the Division of Oncology and Assistant Director of the Section of Cancer Genomics at The Genome Institute at Washington University. As a physician-scientist, my lab studies the genomics, epigenetics and biology of leukemia with a focus on using digital sequencing technologies to garner insight into leukemogenesis. I will also continue to devote time to the clinical care of leukemia and stem cell transplant patients. I completed my Oncology fellowship in July 2011 and continued my post-doctoral research training as an Instructor in Medicine in Dr. Timothy Ley’s laboratory until I transitioned to starting my own laboratory in July 2013. I led the study that sequenced the first mouse model of human cancer (a mouse model of Acute Promyelocytic Leukemia developed in the Ley Lab). I am now extending the findings from that study to more than 100 banked tumors from the same model. Currently, my main research focus is studying the role of loss of function mutations in Kdm6a, a histone H3K27 demethylase, in the role of AML and cancer pathogenesis. In addition, I am working to coordinate making clinical next-generation cancer sequencing available to patients at Washington University School of Medicine. In this regard, I am serving as the administrative chair of the new Genomics Tumor Board, which began comprehensive sequencing of selected cancer cases in the spring of 2014.

Samantha Watson, MBA

Founder/CEO, The SAMFund for Young Adult Survivors of Cancer

Samantha Eisenstein Watson is a two-time young adult cancer survivor, advocate, teacher and mom. Diagnosed with Ewing’s Sarcoma at age 21 and with secondary Myelodysplastic Syndrome at age 23, she created The SAMFund for Young Adult Survivors of Cancer in 2003 to support young adults in their financial recovery from cancer. She is proud to be an active member of the cancer community and an advocate for young adult survivors throughout the country, spreading the message that #cancerisntfree and figuring out ways to help young adults overcome their financial challenges so that they can move forward with their lives. Sam holds a BA in Spanish from Brandeis University and an MBA in Nonprofit Management from the Heller School for Social Policy and Management at Brandeis. She currently lives outside of Boston with her husband and two children, Alex (4 1/2) and Emmy (2).