CAC2 Childhood Cancer Community News Digest (December 5-11)

December 12, 2022
Community News, News Digest No comments yet
Assorted News from the Last Week: For many patients, one of the most antagonizing parts of a hospital visit is paying for parking. Those parking fees aren’t just an annoyance for the sick and injured, according to a new paper in the Journal of Medical Imaging and Radiation Sciences. The charges are actually eating into their financial well-being, particularly for people who have cancer and have to make frequent visits to the hospital for treatments like radiation and chemotherapy. Children diagnosed with diffuse midline gliomas often die within a year after their initial diagnosis since there are no effective treatments yet [...] Read more

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

December 8, 2022
Blog Posts, Community News, Guest Blogs No comments yet

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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CAC2 Childhood Cancer Community News Digest (November 28-December 4)

December 5, 2022
Community News, News Digest No comments yet
Assorted News from the Last Week: "I’d like to introduce you to Josh. . .  Josh, a sound engineer, is also a childhood cancer survivor who lives with profound hearing loss. Josh has a deep love of music. It has been a constant struggle for most of his life. The side effects of chemotherapy treatment robbed him of quality of life." High radiosensitivity of the meninges was observed in pediatric patients with cancer treated before 10 years of age, supporting the use of reduced dose whole brain irradiation and the prioritization of approaches that limit radiation exposure in healthy tissue, [...] Read more

CAC2 Webinar–Hearing Loss from Cisplatin—Multiple Perspectives on the New FDA Preventative Treatment Option

December 1, 2022
CAC2 News, Webinars No comments yet
Children who receive cisplatin as part of their cancer treatment are at risk for progressive and/or permanent hearing loss as a result of their treatment.  This treatment effect can influence speech and language development, educational achievement, and social-emotional development.  Recently, the FDA approved Pedmark, a Sodium Thiosulfate Injection created by Fennec Pharmaceuticals, as a treatment to help reduce the risk of ototoxicity associated with cisplatin.  November’s CAC2 All-Member webinar provided key information about this important breakthrough in improving the quality of life for childhood cancer survivors who received cisplatin. Attendees learned about the importance of this specific drug approval, the [...] Read more

CAC2 Childhood Cancer Community News Digest (November 21-27)

November 28, 2022
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Assorted News from the Last Week: CAC2 Member Mary Beth Collins explains the importance of the new FDA approval of Pedmark:  "With the FDA’s recent approval of Pedmark (an injectable formulation of sodium thiosulfate ("STS"), children are protected from cisplatin’s ototoxicity.  This development is substantial for children in treatment because it maintains their hearing, providing a better quality of life." Hayley Arceneaux became the youngest American to go to space last year after she spent three days in orbit on Space-X's Inspiration rocket. She is telling her story in a new book. Pediatric patients who receive central nervous system (CNS)-directed treatment for [...] Read more

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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CAC2 Childhood Cancer Community News Digest (November 14-20)

November 21, 2022
Community News, News Digest No comments yet
Assorted News from the Last Week: CAC2 Member Joe Baber reflects on the Gabriella Miller Kids First 2.0 legislation pending in Congress:  "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 experience." 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 [...] Read more

Thankful and Fearful

November 21, 2022
Blog Posts, Community News, Member Blogs, Research Explained No comments yet

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
Blog Posts, Community News, Guest Blogs No comments yet
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

CAC2 Childhood Cancer Community News Digest (November 7-13)

November 14, 2022
Community News, News Digest No comments yet
Assorted News from the Last Week: The FDA has approved brentuximab vedotin (Adcetris) in combination with doxorubicin, vincristine, etoposide, prednisone, and cyclophosphamide (AVE-PC) in pediatric patients aged 2 years and older with previously untreated, high-risk classical Hodgkin lymphoma.  Read more:  Administration of a targeted therapy for children with high-risk Hodgkin lymphoma (HL) was found to significantly decrease relapse rates in a large multicenter clinical trial conducted by the Children’s Oncology Group (COG) and published in The New England Journal of Medicine. Researchers have used CRISPR/Cas9 technology to engineer donor T cells to try to treat seriously ill children with resistant [...] Read more
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