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CAC2 Advocacy Alert: End-of-Year Call to Action

December 9, 2024
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During our October federal advocacy drop-in session, we learned about several pieces of legislation that had a good chance to pass before the end of the year and also alerted everyone that “advocates may be called on to make a final push between now and the end of the year.”  That time has come! During this week of action, we need your help: Accelerating Kids’ Access to Care Act—230 organizations (about a third from CAC2) have signed a letter urging lawmakers to pass the bill in the end-of-year legislative package (here’s a link to that letter). Beginning today, December 9th […]

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Member Blog–When the National Drug Shortage Becomes Personal

December 5, 2024
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By CAC2 Individual Member Jennifer Flowers Rhabdomyosarcoma became a common word in my family when I was three years old. By the time of diagnosis, the cancer had metastasized from the middle ear into the mastoid and eustachian tube. The University of Michigan’s C.S. Mott Children’s Hospital oncology team told my parents there was less than a three percent chance for me to live out the year. There was no definitive treatment protocol to defeat this rare form of cancer, and the survival rate was extremely low. Over the next two and a half years, I underwent surgeries, full head […]

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Guest Blog–Conversations on Cancer – Pediatric Cancers: Navigating the Challenges Together

November 19, 2024
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In conjunction with the European Medicines Agency (EMA), the FDA Oncology Center of Excellence (OCE) held a one-hour Conversations on Cancer public panel discussion on November 19, 2024, to examine an array of challenging decisions faced by members of the pediatric oncology community. The panel discussion featured current CAC2 Board Member Nicole Scobie (Zoe4Life) and past CAC2 Board Member Donna Ludwinski (Solving Kids' Cancer). Because of the rarity of cancers arising in childhood and adolescence and high unmet medical need, pediatric oncology drug development is inherently complex. As a result, pediatric oncology clinician investigators are faced with challenges related to [...] Read more

Reflections from International Cancer Week 2024: A Renewed Commitment to the Fight Against Cancer

November 18, 2024
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By CAC2 Student Member Joshua Omale Attending the 2024 International Cancer Week, organized by Nigeria’s National Institute for Cancer Research and Treatment (NICRAT), was indeed a great a experience – one that I won’t forget soon. Under the theme “Accelerating Nigeria’s Path to Comprehensive Cancer Control: Innovation, Access, and Partnership,” the event brought together voices from all corners of cancer care, all driven by a shared mission to tackle cancer across Nigeria and beyond. It was both a learning experience and a reminder of the importance of collaborative efforts in advancing the fight against cancer. The discussions were powerful as […]

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Readout from October 6 Federal Advocacy Drop-In Session

October 25, 2024
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The October 10 Federal Advocacy drop-in session covered three pieces of authorizing legislation and provided an update on possible appropriations for FY2025.  Each of the legislative initiatives have a strong possibility for passage in this Congress, and advocates may be called on to make final pushes between now and the end of the year. Legislation: Give Kids a Chance Act has passed the US House and is awaiting approval in the Senate. This bill would help ensure kids with cancer have access to the most modern clinical trials by authorizing the FDA to direct companies to perform a pediatric cancer study for […]

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CAC2 Member Blog–Wisconsin Pediatric Cancer Action Plan Published!

August 29, 2024
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By CAC2 Member Autumn Gentry, MACC Fund This collaborative state advocacy effort was due to the dedicated work of a pair of CAC2 members in Wisconsin building on the work that came together from other CAC2 members’ efforts.  We love to celebrate when our members work together!  I have been developing an advocacy arm for the MACC Fund with no formal experience or training, relying only on my personal connection to childhood cancer. I’ve noticed a pattern in getting things done: Start with an informed idea. Take a step forward. Listen for feedback. Connect with the right people. Repeat, one […]

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CAC2 Collaborative Achievement–CAC2 Members Build Framework for Advancing Pediatric Cancer Research and Drug Development

July 22, 2024
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At CAC2 we love to celebrate when our members work together.  We offer congratulations to Supporting Organization Day One Biopharmaceuticals and CAC2 member authors and reviewers who contributed to the white paper "Advancing Pediatric Cancer Research and Drug Development through Multi-Stakeholder Collaboration: A Framework Based on the Tovorafenib Journey."   "Advancing Pediatric Cancer Research and Drug Development through Multi-Stakeholder Collaboration" highlights the specific collaborative efforts needed to address the limited treatment options for childhood cancer. Based on learnings from the research and development journey of tovorafenib, a treatment for pediatric low-grade glioma, the paper highlights features of successful collaborations among [...] Read more

NCI Advocacy Update

July 8, 2024
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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

June 10, 2024
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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

June 2, 2024
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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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