All posts tagged: Advocacy

CAC2 Member Blog–Celebrating the Introduction of The Comprehensive Cancer Survivorship Act

By CAC2 Member Jess Kean, Children's Cancer Cause. The Comprehensive Cancer Survivorship Act was introduced in Congress on December 14, 2022. As the only childhood cancer organization involved in the drafting of this legislation, CAC2 Member Children's Cancer Cause is pleased to share the details of this bill with other CAC2 members in the hopes that the community will join us as we work toward its passage. The Comprehensive Cancer Survivorship Act addresses care planning, transition, navigation, reimbursement, quality, and so much more. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall [...] Read more

Thankful and Fearful

By CAC2 Individual Member Joe Baber Because of my grandson, Conor, a neuroblastoma survivor, I have met so many people in our childhood cancer community who want to improve the outcomes of children fighting cancer. We either have children in treatment for cancer or have children who are survivors or have died because of it.  We’re all thankful when there are lifesaving therapies and at the very same time, we are fearful of relapse, side effects of the drugs, chemotherapy, radiation, surgery and even death.  These contrary and parallel emotions seem to be linked in partnership throughout the childhood cancer […]

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Guest Blog–National Cancer Institute Expands Molecular Characterization Initiative for Childhood Cancer Research

The National Cancer Institute’s new Molecular Characterization Initiative (MCI) fosters data sharing in childhood cancer research. The program is expanding comprehensive molecular characterization of tumors to children, adolescents, and young adults (AYAs) with newly diagnosed soft tissue sarcomas receiving care at hospitals affiliated with the Children’s Oncology Group. The DNA and RNA in participants’ tumors are analyzed through this voluntary, free program.  This effort is in addition to the previous cohort that targeted the molecular characterization of newly diagnosed central nervous system tumors in children and AYA patients.   Participants’ tumor and blood samples are analyzed in an accredited lab, with […]

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Community News–Congress Introduces the Childhood Cancer STAR Reauthorization Act

During last week’s Childhood Cancer Action Day, legislation to reauthorize the Childhood Cancer STAR Act was introduced in both chambers of Congress! The original STAR Act was signed into law in 2018 after unprecedented support from our community.  It authorized five years of funding at $30 million annually from 2019-2023.  Also, thanks to the community’s efforts the STAR Act has subsequently received those expected appropriations of $30 million each year.  The STAR Act represents important bipartisan legislation designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. On April […]

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Guest Blog–National Cancer Institute Launches Molecular Characterization Initiative for Childhood Cancer Research

The National Cancer Institute’s new Molecular Characterization Initiative (MCI) fosters data sharing in childhood cancer research. The program currently offers comprehensive molecular characterization of tumors to children, adolescents, and young adults (AYAs) with newly diagnosed central nervous system tumors receiving care at hospitals affiliated with the Children’s Oncology Group. The DNA and RNA in participants’ tumors are analyzed through this voluntary, free program.    Participants’ tumor and blood samples are analyzed in an accredited lab, with results shared with families and doctors within 21 days. This detailed information about the cancer can be used to make a more precise diagnosis, […]

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11th Annual Childhood Cancer Action Days

You’re invited to join the Alliance for Childhood Cancer for the 11th Annual Childhood Cancer Action Days. This virtual event brings our community together to advocate for important childhood cancer issues currently before Congress.

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CAC2 Member Blog–Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

By CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain some of [...] Read more

Webinar: Engaging in Advocacy: How to Amplify the Power of Your Story

Join the Pediatric Brain Tumor Foundation for “Engaging in Advocacy: How to Amplify the Power of Your Story.” Presenters for this webinar include Sarah Milberg, Director of Government Relations and Advocacy at St. Baldrick’s Foundation, Ginny McLean, Outreach and Communications Director for the Swifty Foundation, and Rene Marsh, CNN’s government regulation and transportation correspondent. Following this presentation attendees will be able to: • Describe the key steps to creating and telling your personal story for impactful advocacy • Gain an awareness of how your personal story can contribute to successful advocacy efforts • Describe how social media combines and amplifies […]

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CureFest for Childhood Cancer

CureFest 2021 will take place in a hybrid format this September. There will be an in-person event in Washington, DC as well as an interactive virtual format that will allow families from across the world to hold One Voice Walks and other activities in their own communities. ​2020’s virtual-only format allowed us to reach many families that would otherwise be unable to attend CureFest in person. Based on this success, we made the decision to offer a virtual experience in 2021 even though we will have an in-person presence this year in our Nation’s Capital. CureFest for Childhood Cancer will […]

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