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NCI Advocacy Update

The NCI Council of Research Advocates met virtually on June 26 and heard the latest legislative report, with updates on appropriations, cancer-related legislation, and other ways that NCI is engaging and advocating.  The full deck is below, leading with the latest on the budget progress. Slide 14 highlights Congressional Staff meeting with NCI Director Dr. Kimryn Rathmell and NCI pediatric oncology experts (May 29, 2024).       The presentation also highlighted several pieces of legislation of interest to our community: Pediatric Cancer Drug Supply Act of 2024 (H.R. 6963), which directs HHS to establish a program to create a [...] Read more

CAC2 Member Blog–Empowering Communities: Driving Childhood Cancer Awareness from the Grassroots

By CAC2 Student Member Joshua Omale In the heart of advocacy, the rhythm of change reverberates most profoundly at the grassroots level. For me, this journey isn’t just about raising awareness; it’s about igniting hope, one person and one community at a time. As a passionate advocate for childhood cancer awareness, my path has been shaped by stories I have heard that reflect resilience, bonds of  solidarity, and a relentless pursuit of a brighter tomorrow. In this deeply personal reflection, I invite you to  explore the transformative power of community-driven initiatives in the fight against childhood cancer with me. Grassroots […]

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CAC2 Member Blog–I Am Not A Miracle

By CAC2 Member Steven Giallourakis (The Steven G. Cancer Foundation) When someone has succeeded in life, we tend to think of them as successful. That they have earned the life they have. This might be partially true, hard work does pay off. Yet when we look at someone’s success we tend to gloss over all the luck. If we are talking about business success and the accumulation of wealth, being born in the United States of America is the best roll of the dice you can have. Being born to parents who love you, who support you and can help […]

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CAC2 Member Blog–Accelerating Kids’ Access to Care Act (AKACA) Gains Traction in Congress and Needs Your Help!

By CAC2 Member Matt Marks (Leukemia & Lymphoma Society) State borders shouldn’t be barriers to treatment for children with cancer or other complex illnesses. Yet all too often, they cause challenges—or even treatment delays—for children and their families who rely on Medicaid or CHIP for their health insurance. That’s why I encourage our community to champion the bipartisan Accelerating Kids’ Access to Care Act (AKACA).  This bill would reduce the paperwork required of doctors treating children from out-of-state, so that children can receive the care they need faster and with fewer delays. Recently, the U.S. House of Representatives’ Energy and Commerce […]

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CAC2 Member Blog–Perhaps one day, we can all say hello to the cure. ~The Meo Family

By CAC2 Member Matt Meo (Hello Cure) Our family is yet another childhood cancer family. Our son, Landon Meo, was diagnosed with medulloblastoma on March 25th, 2021 and passed away on December 17, 2022 at the age of 10 and 1/2. Landon always said his wish is that “no kid EVER” have cancer. Like many parents, we found ourselves asking, “What can we do to help?” We frequently saw parents share their child’s story on Facebook and Instagram pages. Many had thousands of followers. Even the ones with smaller followings had a circle of people who genuinely cared about them.  […]

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Community News–Health Subcommittee Markup in the House Energy & Commerce Committee Advances Legislation for Children with Cancer

The Energy and Commerce Committee advanced proposals earlier this month that will extend Americans’ access to telehealth services, strengthen and preserve Medicaid, and encourage innovation to help children with rare diseases. In a Subcommittee markup, the Health Subcommittee forwarded 21 pieces of legislation to the Full Committee for consideration.  Several of them are important to the childhood cancer community: Creating Hope Reauthorization Act (HR 7384). Pharmaceutical companies developing treatments for rare diseases that mainly affect children are eligible for rare pediatric disease priority review vouchers supporting their work. Children represent about half of all people living with a rare condition. […]

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CAC2 Member Blog–Embracing Resilience: Navigating Childhood Cancer Advocacy in Nigeria

By CAC2 Student Member Joshua Omale As I reflect on my journey as a childhood cancer advocate here in Nigeria, I’m continually reminded of the profound resilience ingrained within the fabric of our communities. It’s a resilience born not just of strength, but of necessity, as we confront the daunting challenges that childhood cancer presents. In the heart of Nigeria, where resources are often scarce and access to healthcare is a privilege rather than a right, our advocacy takes on a deeper significance. It becomes a lifeline for families grappling with the emotional and financial burdens of a cancer diagnosis, […]

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Celebrating Pediatric Cancer Social Workers on World Social Work Day: Embracing ‘Buen Vivir’ for Transformative Change

Author: Bethany Lieberman: March 19, 2024, marks World Social Work Day. Today, we sincerely thank all social workers, especially pediatric cancer social workers, who profoundly impact cancer care by assessing young patient’s needs, advocating for resources, and responding to crises promptly. This year’s theme, ‘Buen Vivir: Shared Future for Transformative Change,’ beautifully encapsulates the essence of these professionals’ daily work. We celebrate their commitment, innovative approaches, and holistic perspective, which transform the landscape of pediatric cancer care. Commitment to a Shared Future: Pediatric cancer social workers are the linchpin in creating a shared future for transformative change. Their commitment resonates […]

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Remembering Alea Christine Ramsey – a young woman who touched many hearts.

With a mixture of sorrow and admiration, we announce the passing of CAC2 member Alea Christine Ramsey on January 28, 2024, at age 18. Alea’s life was a tapestry of curiosity, adventure, and an infectious smile that could light up the darkest room. With ocean-blue eyes and an indomitable spirit that embraced every opportunity, she grew into a fearless and sassy young woman. Alea’s interests ranged from building robots and tinkering with power tools to ballet dancing, playing the flute, and singing in the choir to snowboarding, kayaking, and playing softball, lacrosse, and volleyball, and her love of family and […]

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Community News–Childhood Cancer Advocates Support Successful 2024 Action Day!

The Alliance for Childhood Cancer sends its thanks for a fantastic Action Day on February 14.  More than 225 advocates from 32 states participated and shared their stories, asking for congressional support for important legislation and funding for childhood cancer.  CAC2 members, Alliance members, and many others across the country had their voices heard. This year’s asks: Federal Funding for Childhood Cancer Programs We request $30 million to fully fund the Childhood Cancer STAR Reauthorization Act for a 7th year and $50 million to fully fund the Childhood Cancer Data Initiative (CCDI) for a 6th year. Additionally, we urge Congress […]

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