Each year, nearly 70,000 young adults between the ages of 15 and 39 are diagnosed with cancer in the United States. In contrast to those younger and older, survival rates for young adults have not increased since 1975, possibly due to factors such as lack of insurance, less participation in clinical trials and delayed diagnoses. In addition, young survivors often are caught between the worlds of pediatric and adult oncology. They may face a variety of unique long-term effects that will need to be addressed over their lifetimes, such as: reentry into school or the workforce, insurance coverage issues, infertility as a result of treatment, neurocognitive effects or secondary malignancies.
In 2006, the LIVESTRONG Young Adult Alliance (Alliance) was formed as a program of the Lance Armstrong Foundation. The Alliance was a coalition of organizations, including universities and academic medical centers, cancer centers, community hospitals, professional societies, nonprofit/advocacy groups, and liaison members from government agencies such as NCI and the Centers for Disease Control and Prevention.
In the following years, the Alliance and its partners successfully brought attention to the adolescent and young adult (AYA) cancer burden and completed an implementation Plan to address AYAO PRG recommendations, as well as a 5-year strategic plan. In addition, Alliance membership grew to over 350 individuals representing 150 institutions, organizations and government agencies.
In 2011, LIVESTRONG and the YAA Steering Committee decided to create a new Young Adult Alliance separate from LIVESTRONG to enhance the scope of benefits for organizations that serve AYAs diagnosed with cancer. To help the new entity become established financially, LIVESTRONG has granted seed money to the new entity in 2012 and pledges continued support through the end of 2014.
Heidi S. Adams – President & CEO
Heidi Schultz Adams has been a tireless patient advocate since surviving Ewing’s sarcoma in her mid-20s. Her career in advocacy began in 2000 when she founded a pioneering NGO called Planet Cancer to create a community of support and advocacy for young adults with cancer and to raise awareness about their unique medical and psychosocial needs. Her groundbreaking work on behalf of young adults with cancer continued as a founding steering committee member and advocacy co-chair of the LIVESTRONG Young Adult Alliance (now Critical Mass), a unique international coalition that grew to more than 160 advocacy organizations and medical institutions working together to improve survival rates and quality of life for young adults with cancer. Planet Cancer was acquired by the LIVESTRONG Foundation in 2009, and Heidi joined the Foundation to assume a broader role overseeing grassroots advocacy and digital initiatives. Most recently, she served the Foundation as Vice President of Strategic Partnerships. In 2005, she received the prestigious LIVESTRONG Award for her work on behalf of young adults, and in 2006, she was named a Swiffer Amazing Woman of the Year. In 2007, she was recognized as one of four national Health Heroes by WebMD magazine and, in 2008, was a national winner of the prestigious Lane Adams Award from the American Cancer Society, which recognizes exemplary cancer care. A writer by preference, Heidi serves on the editorial advisory board of CURE magazine, and is also the co-author of two books in the cancer space: Here and Now: Inspiring Stories of Cancer Survivors and Planet Cancer: (The Frequently Bizarre but Always Informative Experiences and Thoughts of Your Fellow Natives).
Dr. Rebecca Block – Director of Community Initiatives
As Director of Community Initiatives, Dr. Block is the organization’s primary programmatic liaison with the broader Adolescent/Young Adult (AYA) community. A licensed clinical social worker with a PhD in social research, she previously served as the Psychosocial Research Leader and an Assistant Professor of Medicine at the OHSU Knight Cancer Institute AYA Oncology Program in Portland, Ore., where she developed and implemented a psychosocial research agenda.
As the field of AYA oncology has grown over the years, Dr. Block has contributed to national efforts to increase the quality and standardization of AYA cancer care, and has spoken all over the world on psychosocial issues for AYAs. She served as co-chair of the Standards of Care Task Force in the LIVESTRONG Young Adult Alliance (now Critical Mass), and was the volunteer Conference Chair for the Critical Mass 2013 Annual Conference.
A dedicated volunteer, Dr. Block served 12 years as the mental health director for Camp Starlight, an Oregon camp for children infected and affected by HIV. She also sat on the Planning Commission for Camp Starlight, and served as a member of the Board of Directors for Oncology Youth Connection, a community-building organization inspiring resilient response in young adult cancer survivors.
Dr. Block brings expertise in research, community organizing, and policy development, implementation and change. A project about adolescents with cancer and spirituality she conducted during a research assistantship was her initial inspiration to work in AYA oncology. The synergy of life experiences, clinical work, research studies and connection to social and professional community continues to inspire, motivate and move her in all of the work that she does.