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All posts tagged: Advocacy
A Tribute to Pediatric Cancer Caregivers: Honoring Heroes
At the Coalition Against Childhood Cancer (CAC2), we extend our deepest gratitude to our community’s current and former caregivers. They embody compassion, resilience, and unwavering support for children, adolescents, young adults, and their families confronting a cancer diagnosis or the many complications that arise in survivorship. Caring for a child with cancer is a profound journey marked by a mix of emotions, challenges, and unyielding love. In the shadows of this harrowing ordeal stand the caregivers, often unsung heroes, beside young patients. On this National Caregivers Day, we acknowledge their pivotal roles and the extraordinary commitment they bring to the […]
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Action Days: Know Before You Go
Action Days 2024 takes place February 13-14, 2024, in Washington, D.C. Childhood cancer advocates will have another opportunity to speak with members of Congress to gain support for legislation pending in both the House and Senate. To help prepare CAC2 members before we visit Capitol Hill, we hosted an information webinar with Rosie Abbott, Head of Government Relations at St. Baldrick's, and the Alliance for Childhood Cancer. CAC2 Board Member Susannah Koontz began the webinar with a review of the legislative accomplishments for our community in 2023. Even if you can't attend, the information is helpful in understanding the issues [...] Read more
Community News–Update on Federal Childhood Cancer Appropriations Process
Update from our colleagues at the Alliance for Childhood Cancer (July 28, 2023): The Senate Appropriations Committee has released its Fiscal Year 2024 Labor-HHS Appropriations bill, and we are excited to report that it included language to fully fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative again this year. If you are interested in the details you can find the report language that specifies our Labor-HHS funding priorities is available here. We still have more work to do heading into the fall to make sure our priorities remain in next year’s budget, but the inclusion of STAR and […]
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Make Your Voice Heard Alliance for Childhood Cancer Action Days 2023
We learned more about the Alliance for Childhood Cancer Action Days, which is returning to Washington, D.C., this year for the first time since 2019. Action Days allows you to speak with your members of Congress and their staff to advocate for important childhood cancer issues before Congress. Sharing your story will ensure the voice of kids with cancer is heard loud and clear on Capitol Hill. Click here for more information about Action Days April 24-25, 2023. Make Your Voice Heard PowerPoint Action-Days-2023-Webinar-CAC2 Sarah Milberg Sarah Milberg is the Director of Government Relations and Advocacy for the St. Baldrick's [...] Read more
Pediatric Cancer Advocacy – From Your Own Backyard
Many think of advocacy as traveling to Washington DC and speaking to their Senators and members of Congress, convincing them to pass legislation like the STAR Act. While this is an essential part of advocacy, there are many things that you can do within your state that do not involve travel or engaging politicians. Ann Ramer presented opportunities for connecting with your local Childhood Cancer Community and highlighted the available tools on the CAC2 member page to support your effort. Ann Ramer, MPH Ann is a mother of four children, two of whom developed multiple forms of cancer. She is [...] Read more
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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