Blog Posts – CAC2

CAC2 Childhood Cancer Community News Digest (January 13-19)

January 20, 2025 CAC2

Assorted News from the Last Week: The U.S. Food and Drug Administration (FDA) approved FoundationOne®CDx as a companion diagnostic for Supporting Organization Member Day One Biopharmaceuticals’ OJEMDA, a type II RAF inhibitor, for the treatment of patients six months of age and older with relapsed or refractory pediatric low-grade glioma (pLGG) harboring a BRAF fusion or rearrangement. Pediatric patients with cancer who have obesity at the time of diagnosis may face an elevated risk of mortality. About 30% of adolescents and young adults with cancer who wanted to die at home did not do so. Cancer burden is shifting from [...] Read more

CAC2 Webinar–“Fit for Filing”

January 20, 2025 CAC2

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We are pleased to announce the CAC2 January webinar, "Fit for Filing," where our presenters will explore how research funders can encourage our academic and industry partners to design and conduct clinical trials that produce data suitable for regulatory filing. The "Fit for Filing" webinar will explore designing and conducting academic or academic industry collaborative trials that produce data suitable for regulatory filing. This presentation will cover best practices and considerations for conducting trials ready to submit for regulatory approval. The panel will examine multiple perspectives, including academia, industry, regulatory authorities, funding organizations, and patient advocates. Learn how the FDA [...] Read more

CAC2 Childhood Cancer Community News Digest (January 6-12)

January 13, 2025 CAC2

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Assorted News from the Last Week: Pope Francis tells pediatric cancer patients they are ‘witnesses of hope.’ Unraveling the relationship between stress exposure and childhood anxiety: Considering accumulation, impact, and type in the first five years of life. New symptom reporting tool improves quality of life for children with cancer. Draft guidance from the FDA and Office for Human Research Protections offers draft guidance for incorporating tissue biopsies into clinical trials. Bone mineral density deficits prevalent among childhood cancer survivors, but modifiable risk factors suggest there are targets for intervention. Childhood cancer genome study reveals hidden variants. Transplant of frozen [...] Read more

SPECIAL YEAR-END ADVOCACY ALERT

December 23, 2024 CAC2

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There were five pieces of legislation that had gained a lot of support across both the House and the Senate over the past two years thanks to the collective efforts of the childhood cancer community and our legislative champions: ACCELERATING ACCESS TO CARE ACT: Streamlines out-of-state treatment for children on Medicaid. GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0: Extends research funding authorization for another seven years. GIVE KIDS A CHANCE ACT: Supports pediatric studies on new cancer drug combinations. INNOVATIONS IN PEDIATRIC DRUGS ACT: Imposes financial penalties on drug companies that fail to complete required pediatric studies. PRIORITY REVIEW […]

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

December 9, 2024 CAC2

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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 […]

Member Blog–When the National Drug Shortage Becomes Personal

December 5, 2024 CAC2

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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 […]

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

November 19, 2024 CAC2

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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 CAC2

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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 […]

Readout from October 6 Federal Advocacy Drop-In Session

October 25, 2024 CAC2

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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 […]

CAC2 Member Blog–Wisconsin Pediatric Cancer Action Plan Published!

August 29, 2024 CAC2

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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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