CAC2 Childhood Cancer Community News Digest (June 3-9)

Assorted News from the Last Week: Research from the University of Birmingham could pave the way for using MRI scanning combined with machine learning to assess medulloblastomas for their 'signature' metabolic profiles without the need for invasive biopsy and could rapidly reduce the current 3-4 week wait from presentation to full diagnosis. CAC2 Student Member Joshua Omale blog post: Empowering Communities: Driving Childhood Cancer Awareness from the Grassroots Update on Cancer Predisposition Syndromes and surveillance guidelines for childhood brain tumors Results from the first 384 participants of the Australian Zero Childhood Cancer national precision medicine program (ZERO) show a precision [...] Read more

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 Childhood Cancer Community News Digest (May 27-June 2)

Assorted News from the Last Week: The FDA granted accelerated approval to Eli Lilly And Co’s selpercatinib (Retevmo) for pediatric patients two years of age and older with the following: Advanced or metastatic medullary thyroid cancer (MTC) with a RETmutation, who require systemic therapy. Advanced or metastatic thyroid cancer with a RET gene fusion, who require systemic therapy and who are radioactive iodine-refractory (if radioactive iodine is appropriate). Locally advanced or metastatic solid tumors with a RET gene fusion that have progressed on or following prior systemic treatment or who have no satisfactory alternative treatment options. Three blog posts by CAC2 Members: Perhaps one [...] Read more

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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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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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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CAC2 Childhood Cancer Community News Digest (May 20-26)

Assorted News from the Last Week: The FDA Pediatric ODAC met to "discuss perspectives on the impact of FDARA on the field of pediatric oncology, considerations related to implementation of FDARA for new molecularly targeted drugs and biological products, and the role of proof-of-concept studies using relevant pediatric preclinical models." There was also a discussion of the role of international collaboration and how coordinated approaches to the design and conduct of molecularly targeted pediatric cancer investigations can be best achieved in light of RACE Act regulations. Click here to view all the meeting information and links to key documents and [...] Read more

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 Childhood Cancer Community News Digest (May 13-19)

Assorted News from the Last Week: St. Jude survivorship portal and its ability to facilitate breakthroughs in pediatric cancer survivorship research were published recently in Cancer Discovery. The portal integrates data involving whole genomic sequencing, treatment exposure and outcomes — creating an unprecedented research system that houses 400 million genetic variants from over 7,700 childhood cancer survivors. In an effort to raise awareness about pediatric brain cancer, encourage research on diffuse intrinsic pontine glioma (DIPG) tumors and other pediatric cancers, and honor patients and families who have faced this disease, the U.S. Senate passed a bipartisan resolution (S.Res. 691) designating May [...] Read more

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

Assorted News from the Last Week: To understand how CNS tumors impact the AYA population, NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors), the Central Brain Tumor Registry of the United States (CBTRUS), and the American Brain Tumor Association (ABTA) have partnered on a new statistical report that explores statistical trends in AYAs with primary CNS tumors in the United States between 2016 and 2020. (NCI) Among adults previously treated for a childhood cancer who attained full-time employment 25 years following successful treatment, nearly 30% to 40% either died, became unemployed, or moved to part-time employment or left the labor force [...] Read more