Childhood Cancer Groups Join Forces to Train Childhood Cancer Leaders

Cancer remains the leading cause of death by disease for children in the United States today. Each year, about 13,500 children are diagnosed with cancer—more than a schoolroom of children every day. September is National Childhood Cancer Awareness Month in the U.S., and our organizations are drawing attention to these devastating diseases by training advocates to take action to change the future for children with cancer.

Kathleen Ruddy and Maureen Lilly

Kathleen Ruddy and Maureen Lilly

While the five-year survival rates of some childhood cancers have improved, other cancers, such as neuroblastoma and certain brain tumors, can be terminal when the disease recurs or progresses. One in five children diagnosed with cancer will die from their disease. While undergoing treatment for cancer, many young patients suffer from the toxicity of the drugs they receive. In addition, childhood cancer survivors can experience serious late, long-term effects from their cancer treatments, including heart disease, infertility, secondary cancers, sensory loss, psychosocial issues, and other major health problems.

While these statistics may be daunting, they have galvanized our organizations to action. The Children’s Cause for Cancer Advocacy (CCCA), a non-profit advocacy organization dedicated to improving care and treatment for children with cancer, and the St. Baldrick’s Foundation, the nation’s largest funder of childhood cancer research grants, are collaborating to build a cadre of advocates for children with cancer. Together, we can have far greater influence and impact on behalf of children with cancer and cancer survivors than any single organization could accomplish alone.

With primary funding provided by St. Baldrick’s Foundation, the Children’s Cause has drawn on 13 years of public policy experience to develop an intensive policy and advocacy program, the first of its kind aimed at educating childhood cancer nonprofit leaders. The two-day workshop, “Translating Our Voices Into Action: Challenges in Pediatric Cancer Advocacy,” (TOVIA) is scheduled for October 10-11, 2012, in the Washington, D.C. area.

The event will bring together more than two dozen leaders from across the county with the interest and passion to serve as advocates for children with cancer. The attendees will learn advocacy strategies and current state and federal policy issues that have a direct impact on children with cancer, including health care reform, federal funding, and others, in order to amplify our voices on behalf of children with cancer.

The Translating Our Voices Into Action policy workshop will outline how the continuum of care for children with cancer can serve as a framework for understanding the spectrum of state and federal advocacy issues. Participants will analyze recent examples of legislation that have affected childhood cancer research and cancer survivors’ care and will develop their own draft advocacy plans on these issues.

The workshop will include remarks and presentations from numerous leaders in federal policy, state legislative advocacy, and pediatric oncology.  Michael P. Link, MD, the Lydia J. Lee Professor of Pediatric Hematology/Oncology at the Stanford University Cancer Institute and past president of the American Society for Clinical Oncology (ASCO), will discuss cancer drug shortages in a pre-meeting webinar. Peter C. Adamson, MD, Chair of the Children’s Oncology Group and pediatric hematologist/oncologist at the Children’s Hospital of Philadelphia will address the impacts of federal budget constraints on pediatric oncology clinical research. Jennifer Louis of the Tennessee Cancer Coalition will discuss state health care reform efforts, and Congressional staff will outline the details of the federal budget and appropriations process. Children’s Cause President and Founder Susan L. Weiner, PhD and other Children’s Cause and St. Baldrick’s Foundation staff will lend their expertise on these important issues.

After completing TOVIA’s rigorous policy training, attendees will have the skills and expertise necessary to be effective advocates for children with cancer at the state and federal levels.  Attendees will be prepared to serve as knowledgeable representatives to advisory boards and agency panels that oversee government’s role in the care of children with cancer. They will also be prepared to serve as educational resources to legislators about upcoming health care legislation and research issues that affect children with cancer.

The collaboration of the Children’s Cause and the St. Baldrick’s Foundation is harnessing the passion, dedication and commitment of childhood cancer leaders, survivors, and families from across the country to conquer childhood cancer.

Learn more about the Children’s Cause for Cancer Advocacy at www.childrenscause.org, or on Facebook (facebook.com/childrenscause) and Twitter (@childrenscause).

Learn more about the St. Baldrick’s Foundation at www.stbaldricks.org or on Facebook (facebook.com/stbaldricks) and Twitter (@stbaldricks). 

Maureen Lilly is the executive director of the Children’s Cause for Cancer Advocacy and Kathleen Ruddy is the executive director of the St. Baldrick’s Foundation.

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