Peel Back the Pink Thank You for Being a Part of This Incredible Event - the National Breast Cancer Coalition’S (NBCC) Annual Advocacy Training Conference

Peel Back the Pink Thank you for being a part of this incredible event - the National Breast Cancer Coalition’s (NBCC) Annual Advocacy Training Conference. You know why you are here. Each of us has a unique and important personal experience that brought us to this point and to this meeting. Through our activism, our personal experiences are transformed into a united and formidable political force. That political force has enabled us to celebrate a number of Table of Contents milestones this year. Through the hard work of many, including advocates of NBCC, this country has made important progress toward universal access to quality health care. But the health care reform law is still only words on paper until 3 General Information its implementation on the national, state and local levels. It will take determination and focus to ensure that the promise of health care reform becomes reality. A powerful 5 Schedule-at-a-Glance ConferencePeel political plenary back and two crucial the workshops pinkwill help us understand this new law and strategize around the challenges of implementation. 7 Special Events This yearto we also learn celebrate the what15th anniversary isof our really science training program for advocates – Project LEAD®. If you haven’t done so yet, we invite you to join us this 8 Lobby Day year at a Project LEAD course. We successfully fought for legislation mandating that educatedhappening consumers have seats of influence in at the breasthealth reform tables. We want to 9 Plenary Sessions make sure our Project LEAD graduates possess the highest credentials possible as they fill those seats and cancermake a substantive contribution. today. 11 Workshops The work we do is not always easy, and we do not always agree. But we do agree on what is most important: We cannot-- and will not-- wait another 20 years to 19 Speakers eradicate breast cancer. With enough focus and determination, this country can find a way toLook end this beyond disease. the surface to understand where we 30 2010 Conference Theme: We hopestill this need conference to go. challenges, Get trained inspires and and feel empowers empowered you. We have brought Peel Back the Pink togetherto some have of thea meaningfulbest, researchers, role policy in finding makers, aand cause media andspecialists to help you become the most powerful advocate possible. It promises to be a stimulating, demandinga cure. and satisfying That’s learningthe hallmark experience. of We the also National hope that Breastyou will build powerful and sustainingCancer relationships Coalition and (NBCC), spread the informed word about action NBCC onceto end you go back home - energized and ready to change the world of breast cancer. breast cancer. Conference Dedication: Our leadership over the past two decades has made a real difference. While here, meet some of our Emerging Leaders who are preparing themselves to join our ranks. Welcome Carolina Hinestrosa to them, to our International attendees, and to our returning attendees - thank you all. This year we dedicate the 18th Advocacy Training Conference to the memory of And a special welcome to our first-time attendees – this movement must continue to Carolina Hinestrosa, our friend and colleague, and a leader in our work to end grow in order to accomplish the hard work that lies ahead. breast cancer. For almost two decades, NBCC has gathered us all in D.C. annually from far and wide. A Fulbright Scholar from Bogota, Columbia, Carolina helped galvanize Latina We are thrilled that you are here. We are all in this together, and together we will find a advocacy after her own breast cancer diagnosis in 1994, and subsequently, way to end breast cancer. joined the board and then became the Executive Vice President of the National Breast Cancer Coalition. “Carolina was extraordinary. She was incredibly brilliant, analytical and at the same time warm and compassionate. She never, ever shrank from challenging the status quo. Nothing intimidated Carolina. She wanted to change the world Fran Visco to help everyone,” said Fran Visco. March 7, 1959 – June 21, 2009 President Registration The Center for NBCC Advocacy Training offers premier, intensive training in the All conference attendees should pick up their conference badges and registration packets at the registration desk, located on the Ballroom level of the hotel (two levels below hotel lobby). Registration will be open: science of breast cancer, to prepare breast cancer activists to work as agents of action and change in the mission to eradicate breast cancer! saturday, May 22 10:00 am – 6:00 pm sunday, May 23 7:00 am – 6:00 pm monday, May 24 7:00 am – 6:00 pm Conference Underwriters, President’s Council Members, and Conference Speakers should visit the registration area labeled specifically for these groups to retrieve registration badges and materials. 2011 Pre-Conference Registration Pre-conference registration for the 2011 Annual Advocacy Training Conference will be collected at the registration desk onsite at this meeting. Please complete the 2011 pre-conference registration form found in your registration packet, and return it at the registration desk, to take advantage of low conference Beginner or seasoned advocate, there are training registration rates and secure your attendance at the 2011 meeting! programs for everyone! Our highlights include: Plenary Sessions Project LEAD® Series All plenary sessions will be held in the Renaissance Grand Ballroom (two levels below the lobby), Saturday Project LEAD Introductory Workshop May 22 – Monday May 24. Please refer to page 9 – 10 in this program book for specific beginning and end Project LEAD Institute times, as well as descriptions. Quality Care Project LEAD Workshops Clinical Trial Project LEAD All workshops will be held in the Renaissance Meeting Rooms (one level below the lobby) Sunday, May 23 International Project LEAD – Monday, May 24. Please refer to pages 11–14 & 17–18 for specific times, as well as descriptions. Public Policy, Advanced Science & Continuing Education Special Events Team Leader Training Several special events are offered for registered conference attendees, Saturday, May 22 – Monday, May Emerging Leader Workshop 24. Please refer to pages 7 – 8 for specific information. Advanced Topics at Scientific Conferences LEADcasts Exhibit Hall LEADgrads Online The Exhibit Hall is located in Congressional Hall A/B, on the Ballroom level of the Renaissance Hotel. Exhibit hall hours are: NBCC’s organizational mandate is to train and develop a strong, saturday, May 22 10:00 am – 3:30 pm knowledgeable, nationwide network of breast cancer advocates! Sign up for sunday, May 23 7:00 am – 6:00 pm a course today to develop your advocacy, receive education and training and monday, May 24 7:00 am – 12:00 pm & 3:00 pm – 6:00 pm bring your advocacy into action! Speaker Room A speaker ready room is offered for conference speakers on the Ballroom level of the Renaissance Hotel. Meals Breakfast, breaks, and lunch are provided Saturday, May 22 – Tuesday, May 25 for registered attendees. If you prefer vegetarian or kosher meals, simply indicate your preference to NBCC conference management and we will do our best to accommodate the request. Lost & Found Lost and found will be located at the registration desk. Please turn in any lost item, or seek out your lost Center for Advocacy Training item, at the registration desk. Special Needs Visit the Center for Advocacy Training booth in the Exhibit Hall to learn how to get If you have special needs covered by the Americans with Disabilities Act, please go to the registration desk to address your need. Every reasonable effort will be made to accommodate your special needs. involved! Sign up for the next Project LEAD Institute, taking place August 8-13 2010!

GENERAL INFORMATION 4 Day 1: Lobby Day Briefings Mandatory for participation in NBCC’s Annual Lobby Day Saturday, May 22 Saturday, May 22, 11:00 am – 12:30 pm Tuesday, May 25, 7:30 am – 8:30 am 10:00 am - 6:00 pm Registration All attendees planning to participate in NBCC’s Annual Lobby Day on Capitol Hill must attend 10:00 am - 3:30 pm Exhibit Hall & Silent Auction a Lobby Day Briefing. Attend our Saturday or Tuesday briefing to receive the appropriate information on NBCC’s legislative priorities and lobbying strategies, to most effectively lobby Lobby Day Briefing 11:00 am - 12:30 pm your Member of Congress. 12:45 pm - 1:45 pm First Time Attendee Orientation 1:45 pm - 2:30 pm Raising Change: Meaningful Ways To Support NBCC 2:30 pm - 3:15 pm Emerging Leaders Workshop Day 3: 3:30 pm - 3:45 pm Annual Advocacy Training Conference Opens Monday, May 24 3:45 pm - 5:15 pm PLENARY SESSION: 7:00 am - 6:00 pm Registration So What’s New In Breast Cancer? 7:00 am - 12:00 pm Exhibit Hall & Silent Auction 6:00 pm - 9:00 pm Women with Balls®: STRIKE! Breast Cancer 7:00 am - 8:00 am Continental Breakfast 5th Annual Advocacy Challenge 8:00 am - 8:15 am Moment Of Silence & Announcements 8:15 am - 9:45 am PLENARY SESSION: Day 2: All Breast Cancer Is Not The Same: Rethinking Some Old Ideas Sunday, May 23 9:45 am - 10:00 am Break 10:00 am - 11:30 am PLENARY SESSION: 7:00 am - 6:00 pm Registration The Politics of Health Care Reform 7:00 am - 6:00 pm Exhibit Hall & Silent Auction 11:30 am - 12:00 pm Meet the NBCC Executive Board 7:00 am - 8:00 am Continental Breakfast 11:30 am - 12:00 pm Break 8:00 am - 8:15 am Moment Of Silence, Announcements 12:00 pm - 2:00 pm Annual Advocacy Conference Luncheon 8:15 am - 9:00 am PLENARY SESSION: 2:00 pm - 2:15 pm Break A Sense of Urgency 2:15 pm - 3:45 pm WORKSHOP SESSION 3 9:00 am - 10:30 am PLENARY SESSION: Breast Cancer & The Media: Who Gets It Right? 3:00 pm - 6:00 pm Exhibit Hall & Silent Auction 10:30 am - 10:45 am Break 3:45 pm - 4:00 pm Break 10:45 am - 12:15 pm WORKSHOP SESSION 1 4:00 pm - 6:00 pm Lobby Day State Delegation Meetings 12:30 pm - 1:45 pm Annual Membership Meeting Luncheon 7:00 pm - 9:30 pm Annual Conference Reception 1:45 pm - 2:00 pm Break 2:00 pm - 3:30 pm WORKSHOP SESSION 2 Day 4: 3:30 pm - 3:45 pm Break Tuesday, May 25 3:45 pm - 5:15 pm PLENARY SESSION: Progress: How Does It Happen? 7:00 am - 6:00 pm NBCC Annual Lobby Day

5:30 pm - 7:30 pm 15th Anniversary of Project LEAD (LEADgrads & Faculty Only) 7:30 am - 8:30 am Lobby Day Briefing 9:00 am - 4:30 pm Congressional Visits 4:30 pm - 6:00 pm Congressional Awards Reception

SCHEDULE-AT-A-GLANCE 6 First-Time Attendee Orientation Annual Lobby Day Saturday, May 22, 12:45 pm – 1:45 pm • Auditorium Tuesday, May 24, 7:00 am – 6:00 pm Led by NBCC board members and veteran advocates, this session will help first-time attendees navigate The culmination of the Annual Advocacy Training Conference is NBCC’s Lobby Day on Capitol the conference program and get the very most out of the many opportunities presented at the conference. Hill! Jump right into action and put your advocacy skills to work! Join your fellow breast cancer Special attention will be given to key plenary sessions, must-attend workshops and special events. advocates for a day on Capitol Hill to meet with your state’s Members of Congress! Raising Change: Meaningful Ways to Support NBCC You will: Saturday, May 22, 1:45 pm – 2:30 pm • Congressional Hall C • Lobby for NBCC’s top legislative priorities Have you ever wondered how you could give back to the National Breast Cancer Coalition after conference? • Help shape the national breast cancer research agenda Would you like to understand the connection between fundraising, long-term social change, and movement- • Push for access to high-quality health care for all building? Join us to learn ways you can promote NBCC throughout the year, “friend-raising” and spreading • Support the appropriate funding for breast cancer research the word about our advocacy and education work. • Expand the influence of breast cancer advocates in research, Emerging Leaders Workshop health care and public policy Saturday, May 22, 2:30 pm – 3:15 pm • Congressional Hall C NBCC’s Annual Lobby Day is a cornerstone element to both the Annual Conference and NBCC’s entire year. Senior NBCC activists and current Emerging Leader advocates will discuss the Emerging Leader program. Learn We bring our grassroots network of advocates to the doors of the nation’s decision makers, effecting change how NBCC is developing the next generation of breast cancer advocates and how this year’s conference will in public policy and scientific research to carve out the path that will move us to eradicating breast cancer! develop the next generation’s advocacy skill set to promote NBCC’s mission of ending breast cancer. Luggage Drop Off Women with Balls®: STRIKE! Breast Cancer 5th Annual Advocate Challenge 7:00 am - 10:00 am • Meeting Room 16 Saturday, May 22, 6:00 pm – 9:00 pm • Lucky Strike Lanes, 701 7th Street NW, Washington, DC NBCC has arranged for a valet service to receive and transport luggage to the United Methodists Building A highlight of our Annual Advocacy Training Conference, this fundraiser is an excellent way to enlist your (1 Maryland Avenue, next to the ROA building). Attendees departing Washington from Capitol Hill who need friends and family to support NBCC programs. And yes, there is still time to sign up! Visit the Membership to have their bags transported to the United Methodist Building should take it to Meeting Room 16 in the Booth by 3:30 pm on May 22nd to complete your registration! Women With Balls® T-shirt provided. Renaissance Hotel. If you will be departing from Capitol Hill and need your luggage before 12:30pm, you Entry Fee(s) must transport your luggage yourself. • Bowlers - Show us what you’ve got! Raise a minimum of $500. Bowl, eat, drink and compete for prizes. Lobby Day Briefing (Required for any advocate participating in NBCC’s Lobby Day who missed the • Cheerleaders - Raise a minimum of $250. We’ll spare you the bowling. Eat, drink and compete for the Saturday, May 22 11:00 am briefing) Best Cheerleader prize. 7:30 am - 8:30 am • Auditorium 15th Anniversary Celebration of Project LEAD® Attend this briefing to receive the appropriate information to effectively lobby your Members of Congress and Sunday, May 23, 5:30 pm – 7:30 pm • Renaissance Ballroom support NBCC’s legislative priorities. Save the Date for this special LEAD graduate only event. Join your fellow LEAD graduates and faculty for an evening celebrating 15 years of Project LEAD training, Buses Depart for Capitol Hill for the Day commemorating how the program has grown over the years and looking at where 8:00 am - 9:00 am • K Street exit out of Renaissance Project LEAD will take advocates in the future. Starting at 8:00 am buses will take Lobby Day participants from the hotel to Capitol Hill. The Capitol Hill drop off location is Peace Circle (see map in your attendee bag) located on the west side of the U.S. Capitol. Meet the NBCC Board of Directors NBCC has reserved space in the Reserve Officers Association (ROA Building), 1 Constitution Avenue, NE, for Monday, May 24, 11:30 am – 12:00 pm • Meeting Room 2 the entire day, 8:30 am – 4:30 pm. A light breakfast and refreshments will be available here throughout the day. Attend this event to receive more information on the organizations that make up NBCC’s Board of Directors, and how your organization could potentially join the Board. Congressional Visits 9:00 am - 4:30 pm • Capitol Hill Annual Conference Reception NBCC advocates visit Members of Congress! Monday, May 24, 7:00 pm – 9:30 pm • Renaissance Ballroom Come ready to party and dance it up with old friends and new friends. Music and hors Luggage Transport d’oeuvres provide a fantastic setting to relax, enjoy and prepare for the following day 12:30 pm - 6:15 pm • United Methodist Building on Capitol Hill. Attendees who have left their luggage at the Renaissance Hotel, Meeting Room 16, will have their items transported to the United Methodist Building. You must pick up your luggage by 6:15 pm. Annual Silent Auction Saturday, May 22, Sunday, May 23 & Monday, May 24 Congressional Awards Reception (Available During Exhibit Hall Hours) 4:30 pm - 6:00 pm • Kennedy Caucus Room 325, Russell Senate Building Join us in the Exhibit Hall for the Silent Auction: jewelry, travel, art, gift certificates and Please join NBCC to honor members of Congress who work tirelessly with the National Breast Cancer more! Proceeds support NBCC programs. Coalition in the mission to end breast cancer. (ID required to enter building) Buses Return to Renaissance Hotel 6:00 pm SPECIAL EVENTS 8 All Plenary Sessions will take place in the Grand Ballroom

Saturday, May 22 So What’s New In Breast Cancer? Breast Cancer & The Media: Who Gets It Right? 3:45 pm - 5:15 pm 9:00 am - 10:30am Join us for our annual armchair discussion on what is new in the world of breast cancer. A look at the 2009 How well do the various types of media report on scientific evidence in breast cancer? Hear from those who year in review with a provocative group of speakers from different disciplines and diverse perspectives. report on, interpret, and spin the news and those who analyze the role of media itself. How can the public be Moderator: Gardiner Harris, The New York Times critical health care consumers when the issues are complex, difficult to convey and when the information is Panelists: Barnett S. Kramer, M.D., M.P.H., Office of Disease Prevention, National Institutes of Health; Susan Love, M.D., filtered through the media? M.B.A., F.A.C.S, The Dr. Susan Love Foundation; Olufunmilayo Olopade, M.D., F.A.C.P., University of Chicago Medical Center; Maria Wetzel, Michigan Breast Cancer Coalition. Moderator: Molly Mead, Ed.D., M.B.A., Amherst College Center for Community Engagement Panelists: Lisa Schwartz, M.D., M.S., Dartmouth Medical School; Gary Schwitzer, University of Minnesota; Joy Simha, Young Survival Coalition; Nancy Snyderman, M.D., NBC News; Steve Woloshin, M.D., M.S., Dartmouth Medical School. Sunday, May 23 Progress: How Does It Happen? A Sense of Urgency 3:45 pm - 5:15 pm 8:15 am - 9:00 am What brought us to the existing treatments and research in breast cancer? What will allow us to move in Since NBCC's inception, funding for breast cancer research has increased significantly, awareness of the different directions? Scientific progress depends on innovation – a new therapy that works in a novel way, an disease has become a goal in itself and breast cancer organizations have proliferated. One thing has been original connection between a risk factor and a disease, or a completely different take on science. Hear the lost in all of this: a sense of urgency. We need to regain that drive, push science, and demand real change. history of breast cancer, stories of how innovation happens and how to encourage original thinking and make Hear NBCC president Fran Visco challenge us to look closely at how far we've come and where we still need science work well. to go. Moderator: Cindy Pearson, National Women’s Health Network Speaker: Frances M. Visco, J.D., President, NBCC. Panelists: Amy Bonoff, M.B.A., SHARE; John Glaspy, M.D., M.P.H., Jonsson Comprehensive Cancer Center, UCLA School of Medicine; Stephen Johnston, Ph.D., Biodesign Institute, Arizona State University; Patricia Steeg, Ph.D, National Cancer Institute, National Institutes of Health. Learn the Facts. Monday, May 24 Know the Evidence. All Breast Cancer Is Not The Same: Rethinking Some Old Ideas 8:15 am - 9:45 am Become an Advocate. If all breast cancer is not the same, why assume research should be? Genomic and proteomic research has revealed some of the secrets of how breast cancer develops. But it doesn't explain the whole story. Some old We hear a lot of messages about prevention, screening, ideas about micro environments of tumors, viruses, even infection and injury to the breast are being reexamined. and treatment of breast cancer. But how do we know Are drugs the only answer? Does mind/body play a role? Hear a re-exploration of some of the new/old theories what is true? At KnowBreastCancer.org we give you the that might provide answers to these questions. facts and evidence behind the major issues in breast cancer so you can decide for yourself. Read what women Moderator: Kay Dickersin, Ph.D., Johns Hopkins Bloomberg School of Public Health and men who have had breast cancer have to say. Panelists: H. Kim Lylerly, M.D., Duke University; Laura Nikolaides, M.S., Research Director, NBCC; William Redd, Ph.D., Mt. Then become an advocate for yourself and others. Be Sinai School of Medicine; George Sledge, M.D., Indiana University. empowered by becoming informed.

The Politics of Health Care Reform Peel back the pink. Get the full story. Join the conversation. 10:00 am - 11:30 am Look for the KnowBreastCancer.org The country has just witnessed a contentious debate on health care reform and an equally dramatic passage of health care reform legislation. After numerous versions, revisions and compromises, what exactly is in the new kiosk in the exhibit hall! law? What is the political story behind getting there? Hear from those who were key in shaping, analyzing and reporting on this historic legislation and their thoughts on the challenges to its implementation. Moderator: Susan Dentzer, Health Affairs Panelists: Karen Davis, Ph.D., The Commonwealth Fund; Chris Jennings, Jennings Policy Strategies; Julie Rovner, National Public Radio; Neera Tanden, J.D., Center for American Progress

PLENARIES 10 Integrative Oncology: Workshop SESSION 1: The Center For NBCC Advocacy A Multidisciplinary Approach To SUNDAY, MAY 23 Join NBCC today! Just $35 entitles Training: Find Out Which Project Cancer Prevention & Treatment you to a year-long individual LEAD® Course Is For You Meeting Room 8/9 10:45 pm – 12:15 pm membership with NBCC. Meeting Room 6 What is Integrative Oncology and what is its Learn about the targeted training courses in breast relationship to complementary and alternative Benefits of membership include: cancer science and public policy that the Center Update On PARP Inhibitor medicine? Learn about evidence based research • Support of advocacy to end breast cancer offers to ready breast cancer activists to become Research LEAD to support this multidisciplinary approach to • Receipt of our Call to Action print newsletter agents of change in the mission to eradicate breast Meeting Room 10/11 integrating complementary and conventional • Updates on breast cancer research cancer. Discover more about the science behind PARP modalities to prevent and treat cancer. and legislation inhibitors, their potential as a significant new Moderator: Annette Bar-Cohen, M.A., M.P.H, NBCC Moderator: Ann Fonfa, B.P.S., The Annie Appleseed • Discounts on Annual Conference Registration breast cancer treatment for patients with BRCA1 Speakers: Susie Brain, NBCC; Rachel Kirk, Sisters Project • Eligibility to receive scholarships to attend all Network Northeast Ohio; Sara Schneider, M.S., Florida mutation and triple-negative breast cancer and Speakers: Donald Abrams, M.D., University of California, NBCC advocate training events & courses Breast Cancer Foundation; Susan Turner, Linda Creed the clinical trials underway to determine their San Francisco; Susan Luck, R.N., Mercy Hospital, Earthrose • Email alerts on advocate opportunities Breast Cancer Foundation clinical impact. Institute for Environmental Health • Partnerships with your statewide or local Moderator: Lilla Romeo, SHARE advocacy group Understanding Breast Speakers: George Sledge, M.D., Indiana University; Patricia Steeg, Ph.D., National Cancer Institute, National Visit the Membership table in the Exhibit Cancer Statistics  Institutes of Health Hall to become a member today! Meeting Room 5 Lifetime risk, risk reduction, relative risk, incidence, mortality, survival… What do these concepts really MicroRNA: New Research Systems Change For Activists Avenues In Early Detection mean? Learn how to interpret the vital statistics you Meeting Room 15 read in newspapers and research papers. & Treatment LEAD Maximize your influence by understanding what Meeting Room 12/13/14 a system is and how to change it. Learn about Moderator: Debbie Laxague, R.N.C., Bosom Buddies, Inc. Is there an accurate non-invasive, blood-based, systems change theory, tipping points, and how to Speakers: Lisa Schwartz, M.D., M.S., Dartmouth screening method for breast cancer on the identify leverage factors. Medical School; Steve Woloshin, M.D., M.S., Dartmouth Medical School horizon? Learn about this potential new avenue Moderator: Carol Matyka, M.A., CARE Advocates in breast cancer early detection and targeted Breast Cancer Is Not One Disease  Speaker: Karen Ijichi Perkins, M.B.A., Leapfrog Consulting therapies, and how it is a recently discovered Meeting Room 4 Expanding Your Breast Cancer class of genetic material. What really distinguishes the different types of Meaningful Use Of Health Advocacy Network  breast cancers? Come learn about the tumor Moderator: Sandy Walsh, California Breast Cancer Information Technology Meeting Room 3 biology of breast cancer and how it affects Organizations Meeting Room 16 Join a discussion with people who have built Speaker: Muller Fabbri, M.D., Ohio State University research, prevention and treatment. Health Information Technology (HIT) has received a effective local advocacy groups. Share your current Moderator: Anne Grant, SHARE lot of stimulus funding and is a key aspect of health challenges, hear others’ successful strategies, and Update On The Carolina Speaker: Susan Love, M.D., M.B.A., F.A.C.S., The Dr. care reform – but to what end? Review what progress develop your own network expansion plan. Susan Love Foundation Breast Cancer Study has been made towards lowering costs, improving Moderator: Kathleen Harris, B.A., B.F.A., Wisconsin outcomes and the role of consumer advocates. Breast Cancer Coalition Meeting Room 2 Breast Cancer Treatment: Come hear the latest results from the study’s Moderator: Jo DeMars, DeMars & Associates, Ltd. Speaker: Vernal Branch, Virginia Breast Cancer Foundation principal investigator and a group of advocates New & Emerging Therapies Speaker: Harley Geiger, M.A., J.D., Center for Democracy & directly involved in an epidemiologic research Auditorium Technology Nuts & Bolts Of Congress  study on subtypes of triple-negative breast cancer Discover how to navigate your way through Congressional Hall C among a group of African-American women in the ever-growing maze of new and emerging FDA’s Accelerated Approval Process Explore the basics of how a bill moves through North Carolina. breast cancer therapies. Understand the Meeting Room 7 Congress, how the appropriations and budget biologic mechanisms and explore the evidence Moderator: Sarah Williams, M.A., University of Learn about the FDA’s efforts to enforce regulatory process works and how Congressional committees, North Carolina substantiating the effectiveness of the many mechanisms, assessment and adequate follow-up subcommittees and staff offices are structured. Speaker: Robert Millikan, D.V.M., Ph.D., University of classes of drugs and targeted therapies used in of oncology drugs approved under accelerated North Carolina breast cancer treatment. approval for drugs such as bevacizumab (Avastin®). Speaker: Jennifer Berzok, J.D., NBCC Women’s Health Consultant; Joanne Howes, NBCC Women’s Moderator: Judi Hirshfield-Bartek, R.N., M.S., O.C.S., Moderator: Ginny Mason, R.N., Inflammatory Breast Cancer Health Consultant Dana Farber Cancer Institute Research Foundation Speakers: Ann Partridge, M.D., M.P.H., Dana Farber Cancer Institute; Susan Troyan, M.D., Dana Farber Speaker: Ramzi Dagher, M.D., Pfizer, Inc. Cancer Institute WORKSHOPS 12 Integrative Oncology: Systems Change For Activists Nuts & Bolts Of Congress  A Multidisciplinary Approach To Meeting Room 15 Congressional Hall C Cancer Prevention & Treatment Maximize your influence by understanding what Explore the basics of how a bill moves through Meeting Room 8/9 a system is and how to change it. Learn about Congress, how the appropriations and budget What is Integrative Oncology and what is its systems change theory, tipping points, and how to process works and how Congressional committees, Workshop SESSION 2: relationship to complementary and alternative identify leverage factors. subcommittees and staff offices are structured. medicine? Learn about evidence based research to Moderator: Beverly Canin, Breast Cancer Options, Inc. Speaker: Jennifer Berzok, J.D., NBCC Women’s SUNDAY, MAY 23 support this multidisciplinary approach to integrating Speaker: Karen Ijichi Perkins, M.B.A., Leapfrog Consulting Health Consultant; Joanne Howes, NBCC Women’s 2:00pm – 3:30pm complementary and conventional modalities to Health Consultant prevent and treat cancer. DCIS & The NIH Consensus Starting Breast Cancer Advocacy In Update On PARP Inhibitor Moderator: Jessica Henderson, Ph.D., Western Oregon Conference: Time For A Change? Your Community  Research LEAD University Meeting Room 3 Speakers: Donald Abrams, M.D., University of California, Meeting Room 6 Meeting Room 10/11 Ductal carcinoma in situ (DCIS) is currently treated San Francisco; Susan Luck, R.N., Mercy Hospital, Earthrose Hear from advocates who have started breast like invasive cancer. Distinguish which research Discover more about the science behind PARP Institute for Environmental Health cancer advocacy in their communities! Determine questions need to be answered to appropriately inhibitors, their potential as a significant new breast what it takes to unite local breast cancer activists to manage DCIS and discuss what issues are cancer treatment for patients with BRCA1 mutation Pregnancy & Breast Cancer Risk achieve a common goal. This workshop will focus and triple-negative breast cancer and the clinical important for advocates. Meeting Room 16 on how to get started. trials underway to determine their clinical impact. Moderator: Deb Cole, Rhode Island Breast Cancer Coalition Evidence is mounting that breast cancer diagnosed Moderator: Sharon Ford-Watkins, NBCC Speakers: Barnett S. Kramer, M.D., M.P.H., Office of Moderator: Amy Bonoff, SHARE up to six years after a completed childbirth may Speakers: Christine Norton, M.A., Minnesota Breast Disease Prevention, National Institutes of Health; Helen Speakers: George Sledge, M.D., Indiana University; result in a poorer prognosis. Review the associations Cancer Coalition; Kathy Zeitz, J.D., Bosom Buddies, Inc. Patricia Steeg, Ph.D., National Cancer Institute, National Schiff, SHARE Institutes of Health between breast changes post pregnancy and post breastfeeding, and breast cancer. Understanding Breast MicroRNA: New Research Avenues In Moderator: Krysti Hughett, Young Survival Coalition ® Speaker: Virginia Borges, M.D., University of Colorado Cancer Statistics  Early Detection & Treatment WOMEN WITH BALLS LEAD Health Science Center Meeting Room 5 Meeting Room 12/13/14 Lifetime risk, risk reduction, relative risk, incidence, STRIKE! BREAST CANCER TH Is there an accurate non-invasive, blood-based, mortality, survival… What do these concepts really 5 Annual Advocate Challenge Breast Cancer Is Not One Disease  • screening method for breast cancer on the Saturday May 22, 2010 6 – 9 pm Meeting Room 4 mean? Learn how to interpret the vital statistics you horizon? Learn about this potential new avenue What really distinguishes the different types of breast read in newspapers and research papers. in breast cancer early detection and targeted NBCC thanks everyone who is participating cancer? Come learn about the tumor biology of Moderator: Elisha Baker, Ph.D., The University of Alaska therapies, and how it is a recently discovered class breast cancer and how it affects research, prevention Speakers: Lisa Schwartz, M.D., M.S., Dartmouth Medical in this year’s Annual Advocate Bowling of genetic material. and treatment. School; Steve Woloshin, M.D., M.S., Dartmouth Medical Challenge! Many of you have contributed Moderator: Vernal Branch, Virginia Breast Cancer School to make this fundraiser a great success. Moderator: Sherry Goldman, N.P., R.N.,B.S., Revlon/UCLA Foundation Breast Center Speaker: Muller Fabbri, M.D., Ohio State University Speaker: Susan Love, M.D., M.B.A., F.A.C.S., The Dr. Susan The Power Of The World Wide Web But it’s not too late to sign up! Love Foundation & Breast Cancer Advocacy Visit the NBCC Membership table inside Update On The Carolina Meeting Room 7 the Exhibit Hall by 3:30 pm on May 22, Breast Cancer Study Breast Cancer Treatment: More and more patients and advocates are informed to sign up as a bowler or cheerleader! Meeting Room 2 New & Emerging Therapies about medical conditions, treatments and evidence You still have the opportunity to register Auditorium from the World Wide Web, according to the Pew Come hear the latest results from the study’s for this event and join in the fun! principal investigator and a group of advocates Discover how to navigate your way through the ever- Report, The Social Life of Health Information. directly involved in an epidemiologic research study growing maze of new and emerging breast cancer Weigh in on NBCC’s new interactive website, on subtypes of triple-negative breast cancer among therapies. Understand the biologic mechanisms and KnowBreastCancer.org. a group of African-American women in North explore the evidence substantiating the effectiveness Moderator: Karren Gantswig, Los Angeles Breast Cancer Carolina. of the many classes of drugs and targeted therapies Alliance used in breast cancer treatment. Speakers: Suzannah Fox, Pew Research Center; Shukri Moderator: Sarah Williams, M.A., University of North Sheikh-Salah, NBCC Carolina Moderator: Judi Hirshfield-Bartek, R.N., M.S., O.C.S., Dana Speaker: Robert Millikan, D.V.M., Ph.D., University of Farber Cancer Institute North Carolina Speakers: Ann Partridge, M.D., M.P.H., Dana Farber Cancer Institute; Susan Troyan, M.D., Dana Farber Cancer Institute

WORKSHOPS (continued...) 14 Fireview Room Starbucks Co ee®

LOBBY LEVEL Women Women Men Reservation Desk Presidents Sports Bar Escalators Men Bellstand

Gift Shop Elevators Lobby Bar

Main Entrance

EscalatESCALAorsTORS

Meeting Women Meeting Room 11 Room 8 Meeting Room 17

MEETING ROOM LEVEL Meeting Room 7 Meeting Meeting Room 12 Room 9 Meeting Room 6 Meeting Room 13 MEETINGMeeting Meeting Room 14 ROOMRoom 1010 Meeting Room 5

Meeting Room 4 Meeting Room 15 Meeting Room 3 Meeting Room 16 Meeting Room 2 Food Court Meeting Room 1

Escalators Elevators

Auditorium Women Men

BALLROOM LEVEL EscalatESCALAorsTORS

GRAND BALLROOM

CONGRESSIONAL HALL RENAISSANCE BALLROOM Grand Ballroom Congressional South Hall A Grand Congressional Renaissance Hall B Ballroom Central East West B Renaissance Executive Congressional Hall C Oces Grand Renaissance Women Registration Ballroom West A Desk North Women Men Women Registration Desk Registration Desk Men Escalators Elevators Men

Meeting Meeting Business Room 18 Room 19 Center Workshop SESSION 3: What Happens After Cancer: Building Your Online Network Health Care Reform: What Does Long-Term Effects & Follow-Up to Promote Advocacy This Mean For You & NBCC? MONDAY, May 24 Congressional Hall C Meeting Room 7 Auditorium 2:15pm – 3:45pm Discover the secondary and late effects of breast Master promoting your advocacy and activism Receive an update on the current state of cancer treatment and what we know about the long- messages to your network through social media and healthcare reform legislation. Learn how NBCC’s Hormone Receptor Positive term toxicities of different treatment regimens and web outlets. Then take the next step and use your framework will be supported within this reform Breast Cancer: Treatment lethal risks. personal experiences to support NBCC’s evidence- measure. Hear the next steps in pursuing our priority Resistance, & Metastasis LEAD Moderator: Deb Madden, Ann’s Place: The Home of I CAN based platform. Follow this session on Twitter with to guarantee access to quality healthcare for all. Speakers: Hester Hill-Schnipper, L.I.C.S.W., Beth Israel #bcadvocacy Meeting Room 12/13/14 Speakers: Irene Bueno, NVG; Lisa Foster, NVG Deaconess Medical Center; Saskia Thaidens, R.N., National Speakers: Jarah Moesch, NBCC; Shiloh Stark, Current bench science and clinical work are Lymphedema Network Beaconfire Consulting helping to explain treatment response, treatment Advocacy In State Government resistance and the role of estrogen receptors, Personalized Medicine: Myths & Truths About Breast Cancer Meeting Room 15 alpha and beta, in development of breast cancer Expectations & Evidence Meeting Room 2 Healthcare reform action is moving to the state metastasis. Meeting Room 10/11 So much breast cancer information; so much breast level. Learn to identify the key supporters, where Moderator: Rose Gerber, ECHO Cancer Foundation The era of personalized and evidence-based cancer misinformation! Examine the top ten myths advocates can make the greatest impact for breast Speaker: Suzanne Fuqua, Ph.D., Baylor College medicine is upon us. Learn about efforts to develop about breast cancer with veteran advocates. Share cancer, and discover the differences between of Medicine a network of electronic health information to provide tips on how to best communicate about sensitive and lobbying Members of Congress and working with outcome data as an alternative to clinical trials and controversial topics. State Legislators. Genetic Susceptibility to Cancer: the challenges involved. Moderator: Nancy Ryan, New Hampshire Breast Moderator: Karen Lewkowitz, B.S.N, R.N., Bosom The Role of Genome-Wide Buddies, Inc. Moderator: M. Susanne Hicks, M.S.W., Capital Region Cancer Coalition Speaker: Cheryl Fish-Parcham, M.S.W., Families USA; Association Studies LEAD Action Against Breast Cancer Speakers: Shirley Brown, J.D., Women of Color Breast Lisa Ginther, B.A., MBI Gluck Shaw Meeting Room 8/9 Speaker: John Marshall, M.D., Georgetown University Cancer Survivor’s Support Group; Liz Frank, Ed.M., Dana Tumor banks and new databases are leading to Farber Cancer Institute; Joy Simha, Young Survival Coalition an explosion of information about the genetics of Can Nonprofit Organizations Advocate? Yes! Strategies For Effective Lobbying  Meeting Room 5 breast cancer. Learn more about single nucleotide Meeting Room 6 polymorphisms (SNPs), their significance and Understand how tax-exempt organizations should Get advice from congressional staff, professional how data is being shared to foster collaboration engage in the public policy process. Experts will lobbyists and experienced activists on “how to get among researchers. provide an in-depth overview of nonprofit advocacy your foot in the door”, handle difficult situations Moderator: Maria Wetzel, Michigan Breast Cancer options, as well as how to advocate for NBCC’s and effectively achieve the goal. Hear highlights of Coalition legislative agenda while still maintaining your some of NBCC’s past legislative victories, as well Speaker: Michelle Bennett, Ph.D., National Cancer as its current legislative priorities. Explore how the Institute, National Institutes of Health tax exempt status. Understand how tax-exempt organizations should engage in the public policy legislative process really works. (Attend “Nuts and process. Bolts of Congress” prior) Speaker: TBD Moderator: Claudia Wayne, J.D., DHS Office of Emergency Communications Speakers: Allen Mattison, Lichtman, Trister & Ross, PLLC; Cliff Perlman, J.D., Perlman & Perlman Stay connected with your friends and colleagues Best Practices In Breast Cancer Advocacy while sharing news from the Conference! Meeting Room 4 Become an E-Advocate and say to your contacts at home: “Stand with Me. Peel Back the Pink.” Learn from NBCC Advocacy Grant Recipients who Tell them what you’ve learned, who you’ve met and how they can help Peel Back the Pink, too! have implemented successful programs producing trained consumer advocates who have influenced 2 E-Advocates will win a free trip to next year’s conference! The more people you recruit to meaningful systems change in breast cancer your network and the more updates you send, the better your chances. Stop by the “Stand research, access and public policy. with Me” booth in the Exhibit Hall to participate and learn more.

Speakers: Donna Duncan, Linda Creed Breast Cancer Foundation; Kathleen Livingston, Inflammatory Breast Cancer Be an E-Advocate. Peel Back the Pink. Research Foundation; Marlene McCarthy, H.L.D., Rhode Island Breast Cancer Coalition

WORKSHOPS (continued...) 18 Donald I. Abrams, M.D., is the Chief of Hematology- Jennifer Berzok, J.D., is currently a consultant to Vernal Branch, was diagnosed with Stage I breast Ramzi Dagher, M.D., is currently Vice President for Oncology at San Francisco General Hospital and a Professor the National Breast Cancer Coalition, where she previously cancer in 1995, at the age of 45. Ms. Branch, a wife, mother and Worldwide Regulatory Strategy and Regulatory Head for the of Medicine at the University of California, San Francisco. worked as a lobbyist from 1998-2003. Prior to consulting for grandmother, began her advocacy work in San Diego by joining Oncology Business Unit at Pfizer, Inc. From 2000 to 2008, After completing the University of Arizona Fellowship in NBCC, Ms. Berzok was the Director of Government Relations the Y-ME Breast Cancer Organization and the National Breast Dr. Dagher held several positions at the U.S. Food and Drug Integrative Medicine, he developed an Integrative Oncology for the Biotechnology Industry Organization and managed Cancer Coalition. She is a graduate of Project LEAD® Institute, Administration’s Division of Drug Oncology Products in the practice at the UCSF Osher Center for Integrative Medicine. issues relating to the FDA, intellectual property, Medicare Clinical Trials Project LEAD®, and Quality Care Project LEAD®. Office of Oncology Products. During his time at the FDA, He co-edited, with Andrew Weil, the Oxford University Press and Medicaid. Ms. Berzok has worked on Capitol Hill as a She is a past member of the board of directors of the Virginia areas of special interest included the Accelerated Approval textbook, Integrative Oncology. Dr. Abrams is the current Legislative Assistant to Congressman Sherrod Brown (D-OH). Breast Cancer Foundation (VBCF), and is now on staff at VBCF program, pediatric exclusivity, and international cooperation president of the International Society for Integrative Oncology. She graduated in 1995 with a J.D. from American University, working on advocacy and research issues for the foundation. on oncology regulatory issues. Dr. Dagher received a medical and in 1992 received a B.A. from the University of Michigan. degree and pediatric residency training at the University of Elisha R. “Bear” Baker IV, Ph.D., is Dean of the Shirley Brown, M.S., J.D., is a 16-year breast cancer Maryland, School of Medicine, Baltimore. He has participated College of Business and Public Policy at the University of survivor. She is a retired educator from the Los Angeles Unified in the design and execution of clinical trials at the National Alaska Anchorage. He is a three and half year breast cancer School District, with experiences as an elementary school Cancer Institute. survivor, and an advocate in the fight to eradicate breast cancer. teacher, school psychologist, administrator, and an adjunct He is a graduate of the National Breast Cancer Coalition’s professor at California Lutheran University. Ms. Brown has Karen Davis, Ph.D., is President of The Commonwealth Project LEAD® and Project LEAD Quality Care programs. He worked with numerous public agencies including the California Fund and also currently serves on the Board of Directors serves as an advocate reviewer for the CDMRP, CPRIT, and Dept. of Education, Los Angeles County Regional Centers, Dept. of the Geisinger Health System and on the Panel of Health Komen for the Cure breast cancer research programs. LEAD grads Online is all new of Mental Health, Department of Children and Family Services, Advisors for the CBO. She was Professor of Economics and for any graduate of a project and is an active member of many community and professional Chairman of the Dept. of Health Policy and Management at Annette Bar-Cohen, M.A, M.P.H., has been the organizations. She is on the Board of Directors of NBCC The Johns Hopkins School of Public Health. She was Deputy director of programs for NBCC since 2002, and has worked LEAD course! representing the Women of Color Breast Cancer Survivor’s Assistant Secretary for Health Policy in the U.S. Dept. of Support Project, and is a graduate of NBCC’s Project LEAD® Health and Human Services from 1977-1980. Prior to that, in public health and specifically in women’s health for the Visit LEADgrads Online in the Exhibit Hall past 26 years. She is currently the Executive Director of The and Quality Care LEAD®. she was a Senior Fellow at the Brookings Institution, a visiting Center for NBCC Advocacy Training which includes all of the to view the new website and update your scholar at Harvard University, and an Assistant Professor of Project LEAD® courses and continuing education, the Annual LEADgrad profile! Irene Bueno, J.D., is co-founder and partner of NVG, LLC, Economics at Rice University. Among many other honors, Advocacy Training Conference, and International Initiatives. and a graduate of the University of California, Berkeley and the Dr. Davis received the Academy Health Distinguished Ms. Bar-Cohen was previously the Education Director of Hastings College of Law. Ms. Bueno’s expertise is in developing Investigator Award in 2006 and was honored by the Institute the Cancer Control Section of the Minnesota Department of and implementing legislative, policy, and communications of Medicine with the Adam Yarmolinsky Medal in 2007. Health. She has an M.A. from Goddard College in psychology Amy Bonoff, M.B.A., is an eleven-year breast cancer strategies. Ms. Bueno, a former official in the Clinton and a Master of Public Health degree from the University of survivor and an active NBCC member. She is a graduate of Administration, was Special Assistant to the President in the Minnesota. the Project LEAD® Institute and Quality Care Project LEAD®, White House Chief of Staff’s Office and on the Domestic Policy and takes part in SHARE’s Project LEAD graduate program. Council. Prior to this, she was a Deputy Assistant Secretary for L. Michelle Bennett, Ph.D., is Deputy Director at She has participated in the DOD BCRP Programmatic Legislation at the U.S. Dept. of Health and Human Services. She the Center for Cancer Research (CCR), National Cancer Review and was a recipient of a San Antonio Breast served as a Legislative Assistant to Senator Alan Cranston (D- Institute, National Institutes of Health (NIH). Dr. Bennett leads Cancer Symposium Scholarship. She is also a member of CA) and Congressman Edward Roybal (D-CA). Ms. Bueno is a strategic planning for the CCR, developing and implementing the American College of Surgeons National Accreditation leader in the Asian Pacific Islander American community sitting projects and activities across a broad range of scientific Program for Breast Centers (NAPBC) Access and Utilization on numerous boards and committees. She is a consultant on areas. Dr. Bennett is also Administrative Director of the Strategy Planning Committee. government relations to NBCC. CCR Biospecimen Procurement and Processing Facility, ® assuring that NIH clinicians properly collect human research Virginia Frances Borges, M.D., MSc., received her Beverly Canin, is a Project LEAD graduate and has been biospecimens. Additionally, as head of the CCR Office of medical degree from the University of Medicine and Dentistry of a member of NBCC since 2003. Ms. Canin is President of Communications, she leads an effort to develop materials to New Jersey in 1993 and her M.S.S. from the Harvard Medical Breast Cancer Options, a breast cancer survivor-driven support, educate health professionals about personalized medicine for School/MIT-Health Scientist Training Program in 2001. She education and advocacy organization serving six counties in the cancer. Dr. Bennett is also a faculty member for Project LEAD. completed her Internal Medicine and Hematology/Oncology Hudson Valley, NY. She is an active member of the New York training at the Beth Israel Deaconess Medical Center, Harvard State Breast Cancer Network, as well as the New York State Medical School. She trained at the Dana Farber Cancer Institute Breast Cancer Support and Education Network. She also serves in cancer vaccine development and translational immunology. on the New York State Department of Health, Health Research Jo DeMars, is President of DeMars & Associates, Ltd., She is currently an Associate Professor at the University of Science Board. which manages dispute resolution programs for companies Colorado, Denver, and is Director of the Young Women’s Breast such as Ford Motor Company, eBay, Professional Warranty Cancer Translational Program. Dr. Borges has been a faculty Debra J. Cole, is a member of the Rhode Island Breast Services Corp, Winnebago, and Porsche. In 1995 DeMars member of Project LEAD. Cancer Coalition and the National Breast Cancer Coalition. Ms. was recognized as the Wisconsin Entrepreneurial Woman Cole is a graduate of the Project LEAD® Institute and Project of the Year and in 2005 was recognized as a Woman ® Susie Brain, B.Sc., after finishing treatment of breast cancer, LEAD Clinical Trials. She is the founding member of the New of Distinction by the Waukesha County Foundation. was motivated to take every opportunity to become an informed England Leaders advocacy group and a 2009 “Climb Against She graduated summa cum laude from the University of and educated breast cancer advocate. She is a graduate of all the Odds” team member – mountaineering expedition for Wisconsin-Milwaukee with a B.S. in Education. Following three Project LEAD® programs, which formed the foundation for the Breast Cancer Fund. She was a Patient Advocate award her breast cancer diagnosis in 2005, DeMars became an ® her advocacy efforts. Ms. Brain is a committed patient advocate, recipient for the 2009 San Antonio Breast Cancer Symposium active NBCC advocate and graduate of Project LEAD . active at the local, state, and national levels. She is involved in and is currently a Board Member for the Art beCAUSE Breast both community and research advocacy. Cancer Research Foundation. SPEAKERS 20 Susan Dentzer, is the Editor-in-Chief of Health Donna Duncan, M.B.A., is Executive Director of Linda Lisa Foster, M.A., is a senior advisor at NVG with over a Suzanne Fuqua, Ph.D., is Professor of Medicine at Affairs, the nation’s leading journal of health policy, Creed Breast Cancer Foundation. She is a board member decade of Capitol Hill experience and considerable expertise in the Lester and Sue Smith Breast Center, Baylor College and is an on-air analyst on health issues with the PBS of NBCC, an advocate on the University of Pennsylvania’s health policy. Prior to joining NVG in 2007, Ms. Foster was the of Medicine. She is internationally known for her research NewsHour. She previously led the NewsHour’s health Breast Cancer Center of Excellence, and member of the senior health policy advisor to Senator Jack Reed. Senator Reed on the female hormone estrogen, estrogen receptors, unit, reporting extensively on-air about health care reform Breast Cancer Environmental Center at Fox Chase Cancer serves on several high profile committees, including the Senate their clinical significance in breast cancer progression and debates. She is a member of the Institute of Medicine and Center. Ms. Duncan has over thirty years experience in non- Health, Education, Labor, and Pensions Committee, as well as resistance to hormonal therapies. Her research strategy is the Council on Foreign Relations, and chairs the Board of profit management. She is a graduate of LaSalle University’s the Senate Appropriations Committee. Ms. Foster is an honors aimed at utilizing patient materials for her studies, working Directors of the Global Health Council. She is also on the undergraduate and graduate programs. She holds a B.A. in graduate of the University of California, Santa Cruz and has a to focus clinical questions back to basic laboratory bench board of Research America. Ms. Dentzer graduated from Psychology and an M.B.A. Master’s degree in Economic Policy from American University in to improve the treatment of breast cancer. She has Dartmouth and is a trustee emerita of the college. She Washington, D.C. published over 100 papers in peer-reviewed journals, and currently serves as a member of the Board of Overseers Muller Fabbri, M.D., is a Research Scientist in the has authored 50 Books and Chapters. of Dartmouth Medical School and is an Overseer of the Department of Molecular Virology, Immunology and Medical Melinda A. Fox, B.S., is the Vice President of Development International Rescue Committee, a leading humanitarian Genetics, at the Comprehensive Cancer Center, Ohio for NBCC and brings more than a decade of experience in Karren Ganstwig, retired from a 30 year career as organization. State University. His research is focused on investigating single-issue advocacy fundraising in the non-profit arena. an executive in retail management in order to more fully the mechanisms underlying microRNA deregulation and its Ms. Fox forged her fundraising career at the Fund for Animals focus on breast cancer research advocacy and awareness. involvement in human cancerogenesis. Dr. Muller received the and The Humane Society of the United States where she A two-time breast cancer survivor, Ms. Ganstwig is the Kimmel Scholar Award in 2009 for his work on the role of was an integral part of the Fund’s merger with HSUS and Chair of the Los Angeles Breast Cancer Alliance. She microRNA’s and epigenetics. He has presented his research played a key role in the start-up of its political fund. Ms. Fox also serves on the council of the California Breast Cancer at national and international congresses. oversees the strategic development of NBCC’s multi-faceted Research Program. She is a member of her local hospital fundraising activities. IRB, a member of UCLA Women in Philanthropy, and also Cheryl Fish-Parcham, M.S.W., is a Deputy Director of sits on the Executive Advisory Board of the Iris Cantor Health Policy at Families USA. Her current areas of focus are Susannah Fox, is a survey researcher and ethnographer UCLA Women’s Health Center. Karren graduated cum private insurance, in particular, implementation of the health focused on the social impact of the internet. She has spent laude, with a degree in history from UCLA and is a Project care reform law and state initiatives to cover the uninsured. the last 10 years studying the cultural shifts taking place at the LEAD® graduate. She is the author of numerous reports on designing consumer intersection of technology and health care. All her research is health assistance programs, the plight of the uninsured, published for free at http://www.pewinternet.org. She also Harley Geiger, M.A., J.D., joined the Center for and on Medicaid and private insurance. In addition to her contributes to the blog http://e-patients.net. Democracy and Technology (CDT) as staff counsel in national work, Ms. Fish-Parcham is active in health care spring 2008. His work is divided between the Health advocacy in the District of Columbia, helping to draft DC’s Liz Frank Ed.M., is the Lead Patient Advocate for the Dana Privacy Project and the Security & Freedom Project. Prior Health Care Member Bill of Rights Law and the DC Health Farber/Harvard Cancer Center Breast SPORE. Ms. Frank to working at CDT, Mr. Geiger clerked with the Federal Care Ombudsman Law. She has also provided training to serves as an advocate for the Translational Breast Cancer Trade Commission’s Division of Consumer and Business local groups on various health insurance issues. She holds an Research Consortium (TBCRC), Stand Up to Cancer (SU2C), Education. Previously, Mr. Geiger held Clerk positions MSW from Howard University. and the NCI’s Breast Oncology Local Disease Task Force. She with the Electronic Privacy Information Center, Public is a member of the NBCC Quality Care Committee, where she Broadcasting Service, and the Minority Leader of the Ann Fonfa, B.P.S., was diagnosed with breast cancer follows comparative effectiveness research policy. Ms. Frank Missouri House of Representatives. Mr. Geiger graduated at 44, and founded the Annie Appleseed Project to share holds a B.A. from Boston University in economics and a Masters from the University of Missouri-Columbia with a J.D. as breast cancer information with everyone. Ms. Fonfa is a Degree from the Harvard School of Education. well as an M.A. in journalism. graduate of Food as Medicine, CancerGuides, Workshop on Evidence-based Healthcare, and is also a graduate of Project LEAD®. She has reviewed for DOD, CBCRP, AVON and HII.org. Ann attends many scientific meetings Project LEAD is and gathers and disseminates information to support the Kay (Taddy) Dickersin, Ph.D., is a Professor at rights of consumers to make fully informed decisions about celebrating 15 years of the Johns Hopkins Bloomberg School of Public Health, natural and conventional therapies. Director of the Center for Clinical Trials, and Director of course offerings in 2010! the US Cochrane Center. Diagnosed with breast cancer Sharon Ford Watkins, M.S.W., is Field Director th in 1986, Kay co-founded Arm-in-Arm, a breast cancer at the National Breast Cancer Coalition and directs and 15 If you’re a LEADgrad support group, and was a founding mother of NBCC where manages national public policy advocacy efforts. She Anniversary she served on the Board of Directors from 1991-1994. has more than 25 years experience managing health care be sure to attend the In 1994-95, Kay developed the prototype for the Project and other social service advocacy programs at the local, 1995•2010 15th Anniversary Project LEAD® science curriculum for NBCC. Prof. Dickersin state, and national levels. Ms. Ford Watkins received her also co-developed the online course for consumer master’s in social work from the University of Pittsburgh and LEAD Celebration on advocates, “Understanding Evidence-based Healthcare: completed postgraduate studies in a National Institute of rd A Foundation for Action” in 2007. She received an MA in Mental Health fellowship program specializing in drug and Sunday, May 23 , from Zoology from the University of California, Berkeley, and a alcohol addictions. Ph.D. in Epidemiology from Johns Hopkins University. 5:30 pm - 7:30 pm, in the Renaissance Ballroom!

SPEAKERS(continued...) 22 Rose Gerber, is an active breast cancer advocate Gardiner Harris, is the public health reporter for The Judith Hirshfield-Bartek, R.N., M.S., O.S.N., has working in areas ranging from serving as a consumer New York Times. Before working at the Times, Mr. Harris been on the board of NBCC since 1992 and represents reviewer on three Department of Defense Breast Cancer worked at The Wall Street Journal and lived for four years in the Dr. Susan Love Research Foundation. She serves on research panels, to co-founding and managing a breast Hazard, Kentucky and served as the Eastern Kentucky bureau Show your community, several NBCC task forces and is a graduate of Project cancer mentoring program. Rose is a graduate of 3 chief for The Louisville, Kentucky Courier-Journal. His reporting network, and friends, LEAD® Quality Care. She worked as an Oncology Clinical Project LEAD® courses and serves on NBCC’s Research in Kentucky led to broad changes in laws governing coal-mine Nurse Specialist for many years at the Beth Israel Deaconess Accountability Committee. Rose received patient advocate safety and black-lung compensation, and earned him national your support of NBCC! Breast Care Center in Boston, and is currently at the Dana scholarships to attend ASCO and the San Antonio Breast journalism awards, including a George Polk Award and the Farber Cancer Institute as a Program Nurse coordinator in Cancer Symposium. Rose has academic degrees in Worth Bingham Prize for investigative journalism. Stop by the Merchandise the Women’s Cancer Programs. Ms. Hirshfeld-Bartek is the advertising, public relations, and psychology. 2010 recipient of the Silent Spring Institutes Rachel Carson Kathleen Harris, is founding member and past president area of the Exhibit Award for Breast Cancer Advocacy. She is a past president Lisa Ginther, is a member of the lobbying firm of of the Wisconsin Breast Cancer Coalition and is NBCC’s of the Boston Chapter of the Oncology Nursing Society MBI-GluckShaw, providing contract services to an array Lead Field Coordinator for Wisconsin. She is a graduate Hall to pick up NBCC and the first recipient of the Oncology Nursing Society’s of clients. She began her first public sector employment of Project LEAD® and has served on the Dept of Defense Research Award. at the New Jersey Department of Transportation, providing Breast Cancer Research Program as a peer reviewer. She has goods today! administrative support to various Directors. Later, Ms. served as Symposium Co-Chair for the Era of Hope twice. Joanne Howes, is a frequent advisor to both corporate Ginther joined the administration of New Jersey Governor Ms. Harris has been a presenter/speaker regarding important and nonprofit clients in the areas of lobbying strategies, Christine Todd Whitman, working in the Office of breast cancer issues at conferences locally, nationally and coalition building, and strategic planning. She has done Administration and then the Appointments Office. internationally. Conference T-shirts & Hats ground breaking work in the area of women’s health including breast cancer, domestic violence and women’s John Glaspy, M.D., M.P.H., is Professor of Medicine Pat Haugen, is a thirteen-year survivor of inflammatory Fleece Jackets health research. Ms. Howes oversees projects as a strategic at the Jonsson Comprehensive Cancer Center (JCCC) of breast cancer. She is NBCC’s South Dakota Field Coordinator, advisor for the National Breast Cancer Coalition, Family the University of California Los Angeles School of Medicine. and has experience as a DOD BCRP consumer peer- Violence Prevention Fund and the National Partnership for Dr. Glaspy holds the Estelle, Abe, and Marjorie Sanders reviewer, Integration Panel member, and ad hoc reviewer. Ms. Logo Lunch Bags Women and Families. Prior to forming BASS and HOWES, Endowed Chair in Cancer Research. He is Director of the Haugen is also a consumer reviewer for the California BCRP. Joanne served as legislative director for Senator Barbara JCCC Clinical Research Unit and Director of the JCCC She serves on a local Community Cooperative Group IRB and Tote Bags Mikulski (D-MD), and was a lobbyist for Planned Parenthood Women’s Cancer Research Program. Dr. Glaspy has been is a member of the NCI Adult Central IRB. In addition, she Federation of America. a faculty member of Project LEAD. has served on National Quality Forum Steering Committees and is a member of the Gustavus Adolphus College Board of Pens & Buttons Krysti Hughett, is a five year metastatic survivor of Sherry Goldman, N.P., R.N.B.S., has been Trustees. She is a graduate of all three NBCC Project LEAD® inflammatory breast cancer. Ms. Hughett received extensive dedicated to women’s health for over three decades. She courses. training through the Research Advocate Mentor Program is Nurse Practitioner and one of the original team members Much, Much, More!! at IU/Breast Cancer Center of Excellence and she is of the UCLA Breast Center. She is a member of the Board Jessica Henderson, Ph.D., is a Professor of Public a graduate of Project LEAD®. She attends ASCO and of Directors of NBCC and is a consumer reviewer for the Health at Western Oregon University. Her research interests SABCS and performs grant review for Komen and DOD/ Department of Defense Breast Cancer Research Program. include women’s health, complementary and alternative CDMRP. She co-founded the Indianapolis Cancer Research She chaired “Friends of the Breast Program at UCLA”, therapies, and breast cancer. She was diagnosed with breast M. Suzanne Hicks, M.S.W., was diagnosed with Advocacy Community and has participated in four clinical speaks throughout the world, has co-written a book on cancer in 1994 and completed Project LEAD® in 1995. melanoma in 2001 and breast cancer in 2003. Her breast trials. She is a ResourceLink specialist for YSC, facilitating breast cancer and has been passionate about breast She has served as a consumer reviewer for the DOD and cancer advocacy includes starting a local breast cancer peer their SurvivorLink and MetsLink programs. cancer and advocacy long before she was diagnosed with California BCRP, the AVON Foundation, and as a consumer study group, and serving on an NBCC advisory committee, breast cancer. representative on the FDA Mammography Quality Assurance DOD peer review panels, the NYS Health Research Science Karen Ijichi Perkins, M.B.A., has over 20 years of Committee. She currently serves as a consumer representative Board, and the Love/Avon Army of Women Scientific Advisory experience as a consultant, advisor and trainer to numerous Anne Grant, is a board member of NBCC on the FDA Endocrinology and Metabolic Drug Committee. Committee. She is a Project LEAD® Institute and Clinical organizations undergoing change management. Her current representing SHARE. She is a graduate of all three Trials LEAD® graduate. She is also a retired psychotherapist, work involves organizational and systems change helping Project LEAD® courses and served on NBCC’s Quality professor of psychiatry, and an artist. groups explore solutions to social justice issues. She has Care Committee. She has done peer review for the New also worked with government agencies and private health York State HSRB Breast Cancer Research Grants and Hester Hill Schnipper, L.I.C.S.W., is the Chief of care organizations analyzing business requirements and the American Cancer Society. For the past fourteen years Oncology Social Work at Boston’s Beth Israel Deaconess work flow processes involving information system design. she has volunteered at SHARE in New York City and is Medical Center (BIDMC), an adjunct professor at Simmons a member of SHARE Leaders. Ms. Grant has spoken at College School of Social Work, and the Susan G. Komen Chris Jennings is a more than a 25-year health policy NBCC’s Annual Advocacy Training conferences and co- Breast Cancer Foundation’s first Hatcher Professor of veteran of the Congress, the White House, and the private chaired a symposium at the DOD Era of Hope Conference. Survivorship. She was the Breast Cancer Patient Advocate for sector. Currently he is president of Jennings Policy Strategies She currently holds the advocate position at NYU Cancer RevolutionHealth.com and now writes a daily blog, “Living with (JPS), a nationally-respected health policy and advocacy Center’s Breast Cancer Clinical Case Conference. Breast Cancer” for BIDMC. Ms. Hill Schnipper also serves consulting firm in Washington, D.C. Mr. Jennings has served as the Patient Advocate for the Dana Farber Harvard Cancer as the Policy Advisor to the 2008 Democratic Platform Center’s Breast Cancer SPORE grant. She is past President Drafting Committee, was a senior health care advisor to then of the Association of Oncology Social Work and received Senator Hillary Clinton’s Presidential campaign, and served awards for exceptional social work in 1991 and in 2007. Ms. as the Senior Health Care Advisor to President William Hill Schnipper was also named Boston’s Exceptional Woman Clinton. He was named one of Washington’s 100 most in Health Care by radio station 106.7 MAGIC, in 2005. influential government individuals by theNational Journal. SPEAKERS(continued...) 24 Stephen Johnston, Ph.D., is a Professor of Biology Kathleen Livingston, B.A., B.P.E., has been an Debra Madden, is a two-time cancer survivor: Hodgkin’s Marlene McCarthy, H.L.D., is co-founder and and Director of the Center for Innovations in Medicine in inflammatory breast cancer patient and breast cancer lymphoma diagnosed in her 20s and breast cancer almost volunteer Chair of the Rhode Island Breast Cancer Coalition the Biodesign Institute at Arizona State University. Dr. advocate for 12 years. She represents the Inflammatory twenty years later. She is a Project LEAD® and Clinical Trials (RIBCC). The RIBCC operates a toll-free Helpline for Johnston’s focus is on inventing new technologies for the Breast Cancer Research Foundation on the NBCC Board Project LEAD® graduate; a member of the NBCC’s Quality individuals seeking support and a multi-media Breast Cancer diagnosis and prevention of cancer. He has played an and is a founder and active member of the Michigan Breast Care Committee; and an FDA ODAC Patient Representative. Resource Center. Ms. McCarthy received an honorary integral role in the development of a technology called Cancer Coalition. She is a Project LEAD® and Clinical Trials She also serves on the Eastern Cooperative Oncology Group’s Doctor of Humane Letters at the University of Rhode Island immunosignaturing, for the simple monitoring of cancer, Project LEAD® graduate, and has been an advocate reviewer Patient Representative Committee and the Connecticut in 2001, for breast cancer advocacy locally, nationally, and presymptomatically. His group is currently the only group for the California Breast Cancer Research Program and the Cancer Partnership’s Survivorship Committee. Debra is a internationally. She serves on the Executive Committee and working on a general prophylactic cancer vaccine. DOD Breast Cancer Research Program. Clinical Applications Systems Analyst for a neurology practice Board of Directors for the National Breast Cancer Coalition. in Connecticut. Rachel L. Kirk, is the current president of the Sisters Susan Love, M.D., M.B.A., F.A.C.S., is a pioneer in the Molly Mead, Ed.D., M.B.A., is the founding Director Network Northeast Ohio (an affiliate of Sisters Network, field of women’s health and breast cancer and is a founder John L. Marshall, M.D., received his training at Duke of Amherst College’s Center for Community Engagement. Inc). As a 9 year breast cancer survivor, she has become and Board member of the National Breast Cancer Coalition. University, the University of Louisville, and Georgetown Previously, Dr. Mead was the Lincoln Filene Professor in a staunch supporter and advocate for women battling Currently she is President and Medical Director of the Dr. University. Dr. Marshall is an internationally recognized expert the Department of Urban and Environmental Policy and breast cancer. She is a graduate of the NBCC’s Project Susan Love Research Foundation, focused on eradicating in new drug development for GI cancer, with expertise in phase a founding Director of the Jonathan M. Tisch College of LEAD® Institute and Project LEAD® Quality Care. Her breast cancer through local prevention. She is best known to I, II, and III trial design, and has served as Principal Investigator Citizenship and Public Service at Tufts University. She has advocacy efforts include extensive involvement with the women for Dr. Susan Love’s Breast Book and Dr. Susan Love’s for more than one hundred clinical trials. Administratively, run both faculty and student leadership programs, and a Northern Ohio Breast Cancer Coalition, National Breast Menopause and Hormone Book. Dr. Love’s organization has he directs all clinical research activities within the Lombardi community partnership program - models for using university Cancer Coalition, and the Army of Women. Her goal and also created the Love/AVON Army of Women, an internet Comprehensive Cancer Center and the Lombardi/MedStar and community resources to solve public problems. Dr. Mead passion is to eradicate breast cancer. Her favorite saying solution to partnering women and scientists to accelerate Research Network. Dr. Marshall’s primary focus has been on taught graduate courses in leadership, gender and public is “I Advocate to Eradicate”. basic translational research with a goal of recruiting 1 million the development of vaccines to treat cancer. Dr. Marshall is an policy, and public speaking, and has written numerous books women willing to participate in breast cancer research. outspoken advocate for GI cancer patients and the importance and articles on gender and philanthropy. She has been the Barnett S. Kramer, M.D., M.P.H., a medical of clinical research participation. educational facilitator of Project LEAD® since its inception oncologist, is Associate Director for Disease Prevention in 1995. Dr. Mead received an A.B. from Cornell University, at the National Institutes of Health. He is Editor-in-Chief Ginny Mason, R.N., B.S.N., became involved in advocacy an M.B.A. from Simmons College, and an Ed.D. from the of the Journal of the National Cancer Institute, Chairman following her diagnosis of inflammatory breast cancer (IBC) in University of Massachusetts. of the Physician Data Query (PDQ) Editorial Board on 1994. She joined the newly formed IBC Research Foundation Screening and Prevention, and a member of the PDQ in 1999. She also serves as co-investigator of the IBC Treatment Editorial Board. Dr. Kramer has extensive Research Foundation BioBank. She has been a consumer experience in cancer treatment and prevention trials, reviewer for various grant programs and serves as a Consumer and clinical screening trials of lung, ovarian, breast, and Representative on the FDA Oncologic Drugs Advisory Board. prostate cancers. She’s involved in Oncology Nursing Society, NBCC, American Society of Clinical Oncology, American Association for Cancer Debbie Laxague, R.N., is a nurse and patient Research, and Sigma Theta Tau International Nursing Honor advocate. She is a Project LEAD® and Quality Care Society. Project LEAD® graduate who closely monitors breast cancer news. She chairs a rural northern California county Susan Luck, R.N., B.S., MA. H.N.C, C.C.N., has worked Allen Mattinson, J.D., is a graduate of Georgetown group that assists people touched by breast cancer, and in the field of nutrition and immunology for over 25 years. University Law Center and Washington University in St. co-facilitates support groups and retreats. She is on She is Founder and Director of the EarthRose Institute, an Louis. Mr. Mattison represents educational and charitable NBCC’s Research Advocacy Committee, has reviewed organization dedicated to educating women on nutrition, organizations, political committees and private foundations on proposals for DOD programmatic review and AVON, environmental health, and cancer prevention. She is Program a wide range of tax, campaign finance, lobbying and corporate served as an advocate on the California Breast Cancer Director of the Integrative Nursing Institute and Clinical issues. He has assisted nonprofits with these matters at the Robert C. Millikan, D.V.M, Ph.D., was a member Research Program, and helped prepare patient materials Nutritionist for Special Immunology Services at Mercy Hospital federal level and in all 50 states. Past experience includes of the founding faculty and planning committee for Project for the I-SPY2 trial. in Miami, Florida. She is currently visiting faculty and nutrition communications strategy roles at the Sierra Club, on political LEAD® and has been a member of NBCC since 1992. He consultant at the University of Miami, and also maintains a campaigns, and in the U.S. Senate. has a background in clinical medicine, molecular biology, Karen Lewkowitz, B.S.N., R.N., (ret.) is the private nutrition and wellness coach practice. and epidemiology. His primary interests include genetic NBCC Lead Field Coordinator for Arizona, a Lobby Day Carol Matyka, M.A., is involved in many NBCC efforts, epidemiology and molecular epidemiology. He teaches Team Leader, a Project LEAD® graduate, and an alternate H. Kim Lyerly, M.D., is the George Barth Geller Professor of including grassroots political advocacy, quality care guidelines Cancer Epidemiology, Molecular Epidemiology, Advanced delegate for the NBCC Board. She has spearheaded Cancer Research and the Director of the Duke Comprehensive and measurements, and promotion of research and education. Methods for Epidemiologic Data Analysis, and Genetic breast cancer public policy efforts in AZ for the last 14 Cancer Center. Dr. Lyerly is currently the principal investigator She has been a faculty member of NBCC’s Quality Care Epidemiology at the University of North Carolina, Chapel Hill. years through her work with breast cancer organizations, of the Cancer Center Core Grant, the Duke Specialized Project LEAD®. She has served on review panels for the community boards, and provider groups. She has served Program in Research Excellence (SPORE), directed toward Department of Defense Breast Cancer Research Program Jarrah Moesch, M.F.A., is a PhD student in Integrated on a number of scientific peer review boards and was a developing antigen specific immunity in patients with cancer. and California Breast Cancer Research Program, and as a Media Arts at the University of Maryland. Her research and member of the Sister Study National Scientific Advisory He is an internationally recognized expert in cancer therapy consumer advisor on several breast cancer research grant creative practice investigates and disrupts normative social Board. and immunotherapy, with over 150 scientific articles and has proposals. In 2007 she received NBCC’s Wo(men) Who Get systems through everyday interactions, with a particular focus edited 10 textbooks on surgery, cancer immunotherapy, and It Right national advocacy award. on the intersection of gender performance, queerness and novel cancer therapies. In 2008, Dr. Lyerly was appointed to the construction of normativities in public spaces mediated the National Cancer Advisory Board (NCAB) and was named by and through technologies. She is currently consulting to chair on the Cancer Centers sub-committee of NCAB. NBCC on web designs and social networking media. SPEAKERS(continued...) 26 Laura Nikolaides, M.S., is currently the Director Ann Partridge, M.D., M.P.H., is Clinical Director of Julie Rovner, is a health policy correspondent for Gary Schwitzer, has specialized in health care of Research Programs for the National Breast Cancer the Breast Oncology Center and Director of Dana-Farber’s NPR, specializing in the politics of health care. She is also a journalism for 35 years. He is publisher of HealthNewsReview. Coalition. Previous she worked as a medical writer, a Program for Young Women with Breast Cancer in the Breast contributing editor for National Journal’s Congress Daily. Her org - an award-winning site that grades health news. He has nutritionist, and a biochemistry laboratory instructor. Ms. Oncology Program at Dana-Farber Cancer Institute, and articles have appeared in dozens of national newspapers and taught health journalism and media ethics at the University of Nikolaides was diagnosed with breast cancer in 2007 Assistant Professor of Medicine at Harvard Medical School. magazines. A noted expert on health policy issues, Rovner is Minnesota. Mr. Schwitzer worked in television medical news and quickly became a breast cancer research advocate, Dr. Partridge developed one of the first programs in the country the author of a critically-praised reference book, Health Care for 15 years - at WTMJ, WFAA, and CNN. He was also the graduating from Project LEAD®. She has served as a to focus on young women with breast cancer. Dr. Partridge Politics and Policy A-Z. Its third edition was published by CQ founding editor-in-chief of MayoClinic.com. The Kaiser Family consumer reviewer for the DOD Breast Cancer Research graduated from Georgetown University, earned her M.D. at Press in 2008. In 2005, she was awarded the Everett McKinley Foundation published his 2009 report on the state of U.S. Program, volunteered with the Cincinnati Breast Cancer Cornell University, trained at the Hospital of the University Dirksen Award for distinguished reporting of passage of the health journalism. and Environmental Research Center, launched a breast of Pennsylvania, and completed hematology and medical 2003 Medicare prescription drug bill. Rovner graduated with cancer advocacy blog, received the Alamo Breast Cancer oncology fellowships at Dana-Farber Cancer Institute. She honors from the University of Michigan. Shukri Sheikh-Salah, M.P.H., is the Science Foundation San Antonio Breast Cancer Symposium also received a master’s degree in public health at the Harvard Coordinator at the National Breast Cancer Coalition. She patient advocacy scholarship, and served on working School of Public Health. Nancy Ryan, is Chair of the New Hampshire Breast received her Masters in Public Health degree in August 2009, groups for the I-SPY2 trial. Cancer Coalition and Field Coordinator for NBCC. She and interned at NBCC during her graduate studies. She Cindy Pearson, is the National Women’s Health Network was diagnosed with breast cancer in 1989 and ovarian attends professional meetings and workshops related to her (NWHN) Executive Director. She has worked at NWHN since cancer in 1998. Ms. Ryan has attended every NBCC Annual work at NBCC for the development of KnowBreastCancer. 1987 where she directs NWHN’s programs and policy work. Conference and Lobby Day. She serves as Team Leader for org., including: Summit Series on Cancer Clinical Trails; IOM Ms. Pearson is a transplanted Californian, who moved to NBCC’s Lobby Day, and serves as a reviewer for the DOD FDA Drug forum; NIH women’s health lecture series, Project Maryland after obtaining an undergraduate degree in biology Breast Cancer Research Program. Nancy was honored in LEAD® – Basic Science, & Quality Care. She is a member from UC San Diego, and working as an abortion-rights 1998 at NBCC’s annual gala in New York and completed of the Metropolitan Washington Public Health Association organizer for Colorado NaRAL. She is currently the President NBCC’s science training course, Project LEAD® in 2004. (MWPHA) and the American Public Health Association. of the Board of Directors of Women’s Health Specialists in Northern California, and is the treasurer of the National Breast Helen Schiff, is a 20-year breast cancer survivor and Joy Simha, is co-founder of The Young Survival Coalition, Cancer Coalition. a graduate of two Project LEAD® courses, and is a past a graduate of Project LEAD®, and a member of the Board of Clinical Trials Project LEAD® faculty member. She is an active Directors of the National Breast Cancer Coalition. She sits Cliff Perlman, J.D., is a partner at Perlman & Perlman. member of SHARE in New York City and a co-developer of on the Integration Panel of the Department of Defense Breast He serves on the ABA and the BAR of the City of New York brainmets.org. She has served as a patient representative on Cancer Research Program. Diagnosed with breast cancer in Committee on Non-profit Organizations as well as the boards the FDA Oncologic Drug Advisory Committee, on the Center 1994 at the age of 26, she realized how little was known about of nonprofit organizations and private foundations. Mr. Perlman of Excellence for Brain Metastasis committee as well as a breast cancer in young women. This realization inspired her to has authored articles relating to the Internet, cause marketing, grant reviewer for the Department of Defense Breast Cancer become an advocate and to work to change the status quo and philanthropy. He holds a B.A. from the University of Research Program. for young women affected by breast cancer. Ms. Simha has Wisconsin-Madison and a J.D. from the City University of New worked in corporate communications and video production Christine Norton, M.A., is a 20-year breast cancer York. Sara Schneider, M.S., is a 10-year breast cancer and writes children and adult nonfiction. survivor and co-founder of the Minnesota Breast Cancer survivor, and breast cancer advocate with the National Breast Coalition. She is also a Board Member of NBCC and William H. Redd, Ph.D., is Vice Chairman of Oncological Cancer Coalition and the Florida Breast Cancer Foundation. George Sledge, M.D., is the Ballvé Professor of serves as the Minnesota Field Coordinator. Ms. Norton Sciences and Director of Cancer Prevention and Control at As an advocate, Ms. Schneider focuses on quality care and oncology, Indiana University and has had a lengthy career has done peer reviews of DOD BCRP, NCI, The Avon the Mount Sinai School of Medicine. A pioneer in the study of education issues in breast cancer. In addition to being a in the study and treatment of breast cancer. He directed the Foundation, and the University of Minnesota. A graduate psychological and behavioral factors in cancer, he published Project LEAD® and Quality Care Project LEAD® graduate, Ms. first large, nationwide study on the use of paclitaxel to treat of Project LEAD®, she is a former member of the Scientific the first report on the use of behavioral intervention to reduce Schneider serves on the NBCC Research and Accountability advanced breast cancer and recently his research has focused Advisory Board of the Avon Foundation, and currently aversive side effects of cancer chemotherapy. His current Committee. She also is the patient representative on the Mayo on novel biologic treatments for breast cancer, particularly serves on the Piper Breast Center Advisory Board and the research focuses on cognitive-behavioral factors in the control Clinic Patient Safety and Quality Sub-committee. the development of anti-angiogenic therapy. He has served Breast Cancer Awareness Association Board. of cancer-related fatigue and the dissemination of evidence- as a member of the DOD Breast Cancer Program Integration based supportive care interventions to frontline cancer Lisa Schwartz, M.D., M.S., is a general internist at the Panel, and is currently President-Elect of the American Society Olufunmilayo Olopade, M.D., utilizes the “bench clinicians. He recently received the 2010 Distinguished VA Medical Center in White River Jct., VT and a Professor of Clinical Oncology. to bedside” philosophy in her application of scientific Research Mentor Award from the Society of Behavioral of Medicine at the Dartmouth Institute for Health Policy discoveries to clinical medicine. As an internationally Medicine. Dr. Redd is a member of the DoD Breast Cancer and Clinical Practice. Her research focuses on improving Nancy Snyderman, M.D., is Chief Medical Editor for recognized hematologist/oncologist, Dr. Olopade Research Program Integration Panel. communication about the benefits and harms of medical NBC News. Her reports appear on “Today”, “NBC Nightly specializes in cancer risk assessment, prevention, early care. She co-authored the book, Know Your Chances. News with Brian Williams,” “Dateline NBC,” “MSNBC,” and detection, and treatment of aggressive breast cancer Lilla Romeo, is a 15 year breast cancer survivor Understanding Health Statistics (University of California “MSNBC.com.” Dr. Snyderman has reported on wide-ranging that disproportionately affects young women. In addition, (metastatic for 10). A former teacher and sales executive, she Press, 2008). medical topics reporting from many of the world’s most troubled Dr. Olopade collaborates with clinicians and scientists began her advocacy work at SHARE. She volunteers on the areas. She is also on staff in the Dept. of the Otolaryngology- around the world to reduce the global burden of cancer Hotline, represents SHARE at meetings, and serves on the Head and Neck Surgery at the University of Pennsylvania. Her and improve health in resource-poor nations. steering committee for SHARE LEADers. She is a Project work has been widely published in peer review journals and she LEAD® and Clinical Trials LEAD® graduate. She has testified is the recipient of numerous research grants including those before ODAC and completed Peer Review and Programmatic from the American Cancer Society, The Kellogg Foundation, Review for DOD. She is the third advocate on the Center Of and the American Academy of Otolaryngology-Head and Excellence for Brain Metastasis. Neck Surgery. She has received a number of awards for her broadcasting, is the author of three books and writes a monthly column for Good Housekeeping magazine. SPEAKERS(continued...) 28 Shiloh Stark, is a marketing consultant at Beaconfire Susan Turner, is an operational excellence professional and Maria Wetzel, was diagnosed with breast cancer Consulting, a firm that helps nonprofits design and build Lean Six Sigma Black Belt. Sue grew up in Barbados, received in 1996 and has been an advocate ever since. She has Web sites and online marketing programs. He has planned her BA in England, and worked in Scotland until she moved to graduated from all three NBCC Project LEAD® courses. and executed a variety of online fundraising and marketing Join us in the the US in 1982. She is passionate about helping organizations Maria is serving as an ad hoc member of the DOD BCRP strategy projects including those for ACLU, Feeding America become more efficient and rewarding places to work. Integration Panel, does peer review for the California BCRP, and Heifer International. Prior to joining Beaconfire, Shiloh exhibit hall for and is a consumer advocate on two DSMBs for clinical contributed to the successful online programs of the National Frances M. Visco, J.D., is a more than 20-year breast trials. She is co-chair of NBCC’s Research Accountability AmeriCorps Association, Whitman-Walker Clinic and Public the Conference cancer survivor, the first president of the National Breast Cancer Committee and is a member of the Michigan Breast Cancer Citizen. Coalition, and a member of its Board of Directors and Executive Coalition. Silent Auction! Committee. Ms. Visco was a partner in a Philadelphia law firm Patricia S. Steeg, Ph.D., is Chief of the Women’s before leaving law to focus on NBCC work. In 1993, President Sara Williams, M.A., is a 12-year breast cancer Cancers Section, Laboratory of Molecular Pharmacology, Clinton appointed her as one of three members of the President’s survivor. Ms. Williams is the Enrollment Specialist for the NCI. She studies the molecular regulation of tumor Jewelry, travel, art, gift certificates Cancer Panel, and she was the first consumer to chair the Carolina Breast Cancer Study at UNC-Chapel Hill. She is metastasis. Dr. Steeg is the President of the Metastasis and more are offered! And all Integration Panel of the Department of Defense Breast Cancer a 1999 graduate of Project LEAD®, and served as a Mentor Research Society and Deputy Editor of Clinical Cancer proceeds support NBCC programs! Research Program. She co-chaired the National Action Plan on during the Project LEAD® Institute in 2009. Ms. Williams Research. Dr. Steeg served on the Integration Panel for the Breast Cancer and served on the National Cancer Policy Board. has done peer review for the American Cancer Society, DOD Breast Cancer Research Program. She received the She has testified before Congressional committees and lectures California and DOD Breast Cancer Research Programs, 2008 Brinker Award for Basic Science from the Komen for throughout the United States and internationally on the politics of Susan G. Komen for the Cure, Avon Breast Cancer the Cure Foundation. Dr. Steeg is also a core faculty member breast cancer and women’s health advocacy issues. Research Foundation, and the Cochrane Collaboration’s of Project LEAD®. Breast Cancer Group. She served as President of the Sandy Walsh, was diagnosed with breast cancer in 1984. Breast Cancer Coalition of NC (2000-2003). Ms. Williams Neera Tanden, J.D., is Chief Operating Officer at the She was a founder of the Y-Me Affiliate (now Breast Cancer was one of 25 women selected by Komen and SELF Center for American Progress (CAP), with over a decade of Network of Strength) in Northern California. Currently she is magazine as a 2007 “Yoplait Champion of Breast Cancer.” experience in the executive and legislative branch, as well president of California Breast Cancer Organizations (CABCO) as in campaigns, local government, and think tanks. Before and represents them on NBCC’s Board of Directors. Sandy Steven Woloshin, M.D., M.S., is a general internist returning to CAP as its COO, she served as Senior Advisor has reviewed grants for the Department of Defense Breast at the VA Medical Center in White River Jct., VT and a for health reform at Health and Human Services, advising Cancer Research Program, served on the Council for the Professor of Medicine at the Dartmouth Institute for Health Secretary Kathleen Sebelius and working on the President’s California Breast Cancer Research Program, and serves on the Policy and Clinical Practice. His research focuses on health reform team. Prior to HHS, she was the Director of Scientific Advisory Task Force for the California Teachers Study, improving communication about the benefits and harms Domestic Policy for the Obama-Biden presidential campaign. a prospective cohort of 133,000 teachers. of medical care. He co-authored the book, Know Your Tanden also advised then-Senator Clinton as her Legislative Chances. Understanding Health Statistics (University of Director and later worked on the 2008 Clinton presidential Claudia E. Wayne, J.D., currently works for the Dept of California Press, 2008). campaign as Policy Director. She received her B.S. at UCLA Homeland Security, Office of Emergency Communications. and a law degree from Yale Law School. Previously she was a Principal with the SRA Touchstone Kathy Zeitz, J.D., is a Project LEAD® graduate and DOD Consulting Group. Ms. Wayne has been executive director of BCRP peer and programmatic reviewer. She was a member Saskia R.J. Thiadens, R.N., is a nurse patient advocate the Center for Child Care Workers and the National Committee of the NAPBC Hereditary Susceptibility Subcommittee and who became aware of the ignorance of lymphedema in late on Pay Equity, served as Deputy Director of Women’s Rights testified to the U.S. Senate regarding the need for effective 1988, and not only treated over 4,000 patients in the first for the American Federation of State, County and Municipal genetic non-discrimination legislation. She was a consumer LE clinic in the US, but founded the National Lymphedema Employees, and taught law and ran the Women’s Rights Clinic advisor for a genomics and public policy grant at Duke network, and since that time has worked tirelessly on at Antioch School of Law. Ms. Wayne has worked with NBCC University’s Center for Public Genomics. educating patients, professionals, and the general public. and served on several boards, including the Mautner Project for She discusses Risk Reduction Practices, and what to do Lesbians with Cancer. She received her J.D. at Suffolk University when LE develops, including long time strategies and some Law School. of the evidence known.

Susan Troyan, M.D., is a Breast Surgeon at the Dana- Silent Auction Hours Farber/Brigham and Women’s Cancer Center in Boston, 2010 Conference Theme: Peel Back the Pink and an Instructor in Surgery at Harvard Medical School. Bidding: She worked for many years at the Beth Israel Deaconess Saturday 10:00 am – 3:30 pm NBCC’s Annual Advocacy Training Conference educates and trains advocates in all areas related to breast cancer, from research design and funding, to treatment, clinical trials and public policy. The first conference was held in 1993. Since then, we’ve held Hospital. She is a frequent guest lecturer on breast cancer Sunday 7:00 am – 6:00 pm and women’s health issues in various forums, both political the conference annually to bring advocates from all over the world to Washington DC for three days of rigorous training that and medical, and is a Core Faculty Member for NBCC’s Monday 7:00 am – 12:00 pm teaches advocates how to have a meaningful voice when it comes to breast cancer issues. Project LEAD® courses. Her current research project is working with a new near infra-red light technology to aid in Checkout: The theme for the 2010 Annual Advocacy Training Conference is “Peel Back the Pink” NBCC’s education this year will teach guiding surgery. conference attendees what is really happening in breast cancer today. Following NBCC’s strategic approach, the 2010 Monday 3:00 pm – 6:00 pm Conference will teach advocates how to create real change in the systems that effect breast cancer. NBCC will go deeper than ever before, to peel back the pink, and teach advocates the layers of involvement and the impact they can have in systematic change to how breast cancer research is conducted and public policy decisions are made, to ultimately eradicate breast cancer.

SPEAKERS(continued...) 30 Conference Corporate Sponsors (as of 5/10/10)

Principal Underwriters Breast Cancer Fund of National Philanthropic Trust Genentech, Inc.

Underwriters AVON Foundation for Women Amgen Entertainment Industry Foundation The Joyce & Irving Goldman Family Foundation Lilly USA, LLC sanofi-aventis U.S.

Benefactors Bristol-Myers Squibb Genomic Health Novartis Oncology Virginia Clinton Kelley Fund

Donors Avalon Consulting Group, Inc. Beaconfire Consulting NVG, LLC

1101 17th Street, NW, Suite 1300, Washington, DC 20036 P 202.296.7477 F 202.265.6854 StopBreastCancer.org