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Community News–Update on Federal Childhood Cancer Appropriations Process

July 28, 2023
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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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Guest Blog–Molecular Characterization Initiative (MCI) Continues to Enroll

March 6, 2023
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In March last year, the CCDI Molecular Characterization Initiative (MCI) launched. Since then, it has opened enrollment to children, adolescents, and young adults newly diagnosed with central nervous system tumors, soft tissue sarcomas, and rare tumors—with plans to expand. Results have been returned to more than 750 participants. Data released from the initiative are searchable through the database of Genotypes and Phenotypes and Seven Bridges’ Cancer Genomics Cloud. See Where Can These Data Be Accessed? on the MCI web page for more information about access. Enrollment continues and participation is free. Potential participants must also be receiving care from a […]

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Community News–Year-End Legislative Success for Childhood Cancer

December 23, 2022
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We'd like to congratulate our colleagues at the Alliance for Childhood Cancer, our members, and all the advocates who have worked so long and hard to continue making a difference for all children and adolescents with cancer, their families, and for survivors.  The last legislative week of 2022 has brought many gifts. Both the US Senate and House of Representatives unanimously passed the reauthorization of the Childhood Cancer STAR Act for another five years!     In addition, the final omnibus appropriations package contained all of the hoped for funding! This includes full funding for the Childhood Cancer STAR Act [...] Read more

CAC2 Member Blog–Celebrating the Introduction of The Comprehensive Cancer Survivorship Act

December 19, 2022
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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

Save the Date! Action Days 2023 Returns to Washington, D.C.

December 8, 2022
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By Guest Blogger Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer and Director of Government Relations and Advocacy for the St. Baldrick’s Foundation Thanks to advocates like you, we have been able to make great progress on important childhood cancer issues before Congress. The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023. Action Days gives you an opportunity to speak with your members of Congress and their staff to advocate for important childhood cancer issues before Congress. Sharing your story next […]

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Survivorship Matters Blog: Pedmark – Improving Quality of Life for Childhood Cancer Survivors Preventing Chemo-Induced Hearing Loss

November 28, 2022
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Survivorship Matters Blog By CAC2 Individual Member Mary Beth Collins “Your child has to be alive to experience side effects” It is heard by every parent of a child with a high-risk pediatric cancer when reviewing treatment protocol: your child must endure and survive all of the therapies first, before a parent can afford to be concerned about side effects.  It’s a pragmatic priority; the focus is on keeping your child alive and achieving No Evidence of Disease, or ”NED” as commonly referenced.  With the most challenging cancers, it is spoken with earnest and delicate honesty. Today, according to the […]

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Thankful and Fearful

November 21, 2022
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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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Childhood Cancer Data Initiative Welcomes Dr. Gregory Reaman as Its New Scientific Director

November 17, 2022
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This month, Dr. Gregory Reaman was named by the Childhood Cancer Data Initiative (CCDI) as the new Scientific Director. In this role, Dr. Reaman will develop, direct, and coordinate CCDI programs and initiatives, as well as provide scientific oversight and recommendations to drive CCDI’s vision and progress. He comes to NCI most recently from the US Food and Drug Administration, with a career dedicated to caring for children with cancer and decades of leadership experience improving childhood cancer research. The CCDI team isn’t the only part of CCDI that expanded. NCI released initial data from the CCDI Molecular Characterization Initiative, [...] Read more

The Fit for Filing Group at ACCELERATE

November 14, 2022
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Blogged with permission and thanks by the ACCELERATE Fit for Filing Working Group   The ACCELERATE PLATFORM’S Fit for Filing (FFF) group was formed in 2019 to explore the issues of academic-led trials that typically do not produce data that is fit-for-filing to gain marketing approval by regulatory agencies.   The scope of Fit for Filing (FFF) is to develop best principles on how to design and deliver an academic or academic & industry collaborative trial with a dataset that can be included in a package for regulatory filing.Objectives of the FFF working group are: Define the barriers and propose solutions to ensure […]

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Guest Blog–New FDA Draft Guidance Aims to Protect Children who Participate in Clinical Trials

November 5, 2022
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The U.S. Food and Drug Administration issued a draft guidance that, when finalized, will provide the agency’s perspective on the ethical considerations for including and protecting children in clinical trials. The draft guidance is intended to assist industry, sponsors and institutional review boards (IRBs) when considering the enrollment of children in clinical investigations of drugs, biological products and medical devices.  “Children need access to safe and effective medical products and health care professionals need data to make evidence-based decisions when treating children. However, children are a vulnerable population who can’t provide consent for themselves and are afforded additional safeguards when participating in […]

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