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2012 Annual Report

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2012 Annual Report Lisa J. Frank Dinamarie Alcuri DIRECTORS EMERITI Jennifer Merschdorf Cindy Kicinski President Chief Executive Officer Regional Field Manager (South) Anna Cluxton Ken Preston Karen Borkowsky-Kennedy Stacy Lewis Peter Lenz Lise Geduldig Randi Rosenberg (1965 – 2010) Vice President Chief Program Officer Website and Database and Deputy Chief Executive Technology Associate Mitchell Fink Courtney Hagen Cynthia Rubin Secretary Joy Simha Lori Atkinson Megan McCann Chief Community Officer Senior Manager, National Programs Michael Wirth Ann Partridge, MD, MPH Treasurer Heather McGrew Dana McCaw Chief Operating Officer Development Manager Jenna Glazer Kari Nesbitt Senior Director of Development National Marketing Associate Mary Ajango Jennifer Owens Ann Partridge, MD, MPH Kathryn M. Kash, PhD Edith Perez, MD Volunteer Program Manager Program Associate Chair, YSC Medical Advisory Board Thomas Jefferson University; Mayo Clinic Suzanne Beckmann Jean Rowe Dana-Farber Cancer Institute; Jefferson Medical College Harvard Medical School Bert Petersen, MD Director of Communications Program Manager, Survivorship & Support Roz Kleban, MSW Beth Israel Medical Center; Deborah Axelrod, MD Kristen Buckler Memorial Sloan-Kettering Cancer Center St. LukeÕs/Roosevelt Hospitals Nirmala Singh Saint VincentÕs Medical Center, NYC Events Associate Program Associate Thomas Kolb, MD Karrie Zampini Robinson, Natasha Campos Leslie Bernstein, PhD Lichy & Kolb Radiology CSW, ACSW Development Associate Jennifer Stanley University of Southern California; Fighting Chance Senior Manager, Field Operations LA County Cancer Surveillance Program Minetta Liu, MD Irma H. Russo, MD, FCAP, FASCP Dessie Chappin Lombardi Comprehensive Cancer Center Kristin Stanley Ira Bleiweiss, MD Fox Chase Cancer Center Operations Manager Events Associate Mount Sinai School of Medicine Susan Love, MD Michelle Esser Susan Love Breast Cancer Jose Russo, MD, FCAP Program Manager, Medha Sutliff W. Archie Bleyer, MD Research Foundation Breast Cancer Research Laboratory; U.S. Army Breast Cancer Advocacy & Research Regional Field Manager (Northeast) St. Charles Health System Training Program Knight Cancer Institute at the Oregon Edward A. Luce, MD Virginia Falces Nicole Taylor Health and Science University Case Western Reserve University Lillie Shockney, RN Website Man ager Regional Field Manager (West) The Johns Hopkins Breast Center Ernie Bodai, MD Kathy Miller, MD Dana Freeman Griffin Mollie Toland Kaiser Permanente, Sacramento; Indiana University Hospital George W. Sledge, Jr., MD Constituent Communications Manager Regional Field Manager (Midwest) UC Davis; thehealthchannel.com Indiana University Hospital Anne Moore, MD Naomi Gewirtz Stephanie Werthman Judy Garber, MD, MPH Weill Cornell Medical College Richard G. Stevens, PhD Director of Employee Relations Design Consultant Dana Farber Cancer Institute UConn Health Center Larry Norton, MD Erin Hawkins Curt White Aron Goldhirsch, MD Memorial Sloan-Kettering Cancer Center Alexander J. Swistel, MD Executive Assistant/ Director of Technology European Institute of Oncology Weill Cornell Medical Center Operations Associate Kutluk Oktay, MD, FACOG Laurie Goldstein, MD New York Medical College; Deborah Toppmeyer, MD Annie Hiller East Side WomenÕs Ob-Gyn Associates New York-Presbyterian Hospital Cancer Institute of New Jersey Donor Relations Associate Clifford Hudis, MD Olufunmilayo Olopade, MD Eric Winer, MD Jennifer Johnson Memorial Sloan-Kettering Cancer Center University of Chicago Medical Center Dana-Farber Cancer Institute Director of Marketing Young Survival Coalition (YSC) will turn 15 years old in 2013. As we commemorate this anniversary, we reflect on how we got here ... while looking forward to the future. In 1998, three young survivors, all diagnosed before the age of 35, made a selfless commitment to ensure young women would never face breast cancer alone. Because of that determination, YSC was there to support me when I was diagnosed at the age of 36 in 2010. Because of their perseverance, women across the country are empowered, educated and supported. Fifteen years ago no one was advocating for young women with breast cancer. Our founders made history by establishing the fi rst national nonprofi t organization dedicated exclusively to supporting and advocating for young women with breast cancer. Those three women, and the many others who joined YSC that first year, knew the importance of working together as one community. Fifteen years ago no one was advocating for young women with breast cancer. Our founders made history by establishing the first national nonprofit to do so. Thank you to all of the committed volunteers, supporters, sponsors and partners that ensure our critical work can happen. It is because of all of you that weÕre able to help young women with breast cancer across the United States during one of the most challenging times in their lives. Please join me in celebrating an astounding 15 years and our resolve to reach every young woman Jennifer Merschdorf, chief executive officer and young survivor impacted by breast cancer in the years to come! Photo by Michael Segal Photography Jennifer Merschdorf Chief Executive Officer Young Survival Coalition 1 y 1998, pink ribbons had become synonymous with breast cancer, but many were still unaware it could affect young women. With no information on long-term treatment impacts and how to address issues of working through treatment, infertility, early menopause, dating after breast cancer or balancing treatment while raising young children, young women facing breast cancer felt alone. This all began to change when Young Survival CoalitionÕs (YSC) three founders connected. Joy Simha and Roberta Levy-Schwartz had met through family friends, and the group expanded when Lanita Moss, a colleague of RobertaÕs, was also diagnosed under the age of 35. Roberta, Joy and Lanita were determined to enact change and set a goal to find other youngyg survivors to tackle the challenges g they y were facing.g On November 1, 1998, 12 women gathered. They spent the day brain- storming and developed a plan to make YSC a reality. In 1999, YSC became a legal entity and launched the first website dedicated exclusively to young women with breast cancer. Early on, YSC focused on educating members and learning more about the gaps in research. YSC became the first group to bring young adult oncology issues to the forefront, emphasizing the need for more research and understanding of cancer in young adults. In 2006, YSC became a founding member of the Young Adult Alliance, now Critical Mass, and continues to be viewed as a thought leader, having been invited to the White House and to participate on both public and private task forces. Over the years, YSC became a trusted voice for young women affected Above,Abob ve, leftleft to rigright:ht: YSC co-founco-foundersders RoRobertaberta Levy-ScLevy-Schwartz,hwartz, JoJoyy SSimhaimha anandd Lanita Moss in 22008008 by breast cancer. In 2001, YSC convened the first symposium focused Top right: Volunteers at the 2000 volunteer retreat All photos property of YSC on ÒBridging the Gaps: Current Issues in Medical Research on Young 2 YSC’s three co-founders identified First meeting with 12 young breast cancer YSC launched youngsurvival.org, - Founding members attended NBCC Advocacy need for a group focused on young survivors took place in New York City; the first website exclusively for Training, which served as the catalyst for YSC’s AUG APR NOV MAY 1998 women with breast cancer YSC’s mission and vision created 1999 MAR young women with breast cancer focus on action, advocacy and awareness YSC was the fi rst group to bring young adult oncology issues to the forefront, emphasizing the need for more research and understanding of cancer in young adults. WomenW and Breast Cancer Ñ A Basis for Action & AdvocacyÓ resulting in a game-changing whitete paper. The next year, YSC began a partnership to co-host a national conference focused solely on thehe unique issues that young women face, now in itsits 13th year and today called C4YW. TheTh uniquenique issuesissues werew brought to light when YSC members werere featured as part of the 2002 Lifetime television documentary ÒFightingng for Our Future.Ó By 2005, YSC had published the ResourceLinknk Guidebook, a trailblazing guide to support and services for womenen available nationally and in their local areas. Over the years, YSC alsoso created three innovative treatment navigators to help young womenen Top: YSC membersmembers advocatedadvocated in Washington,Washington, D.C.D.C. BottomBottom:: VoVolunteerslunteers at tthehe 22012012 VoVolunteerlunteer SSummitummit navigate diagnosis and treatment, post-treatment and living withth metastatic breast cancer. YSC began as a grassroots community and committed volunteers remain CELEBRATE OUR 15TH ANNIVERSARY its strength. YSC will continue to be the champion for young women YSC will highlight its history throughout 2013. Visit youngsurvival.org the 15th of every month affected by breast cancer and work to ensure that no young woman faces to learn more. breast cancer alone. 3 23 women gathered YSC Logo YSC OB/GYN awareness campaign First YSC Executive Director hired for YSC’s first volunteer introduced reached 10,000 doctors to manage YSC’s rapid growth MAY 2000 MAR leader retreat AUG he Big Easy saw more than 650 attendees arrive for 2012Õs C4YW (The Annual Conference for Young Women Affected by Breast Cancer) united in a quest for knowledge and a desire to connect with other young women
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