CAC2 Childhood Cancer Community News Digest (December 12-18)

December 19, 2022
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Assorted News from the Last Week: FDA approves Brentuximab for high-risk Hodgkin Lymphoma in children and adolescents. The Comprehensive Cancer Survivorship Act was introduced to address 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 patient-centered quality of care and navigation needs of the nation’s 18 million cancer survivors of all ages. Some brides may take photos near a scenic lake, outside a stately chateau or maybe inside an adorable rustic barn.  But CAC2 Member and childhood cancer survivor Riley Stock Wagner, [...] 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

CAC2 Webinar–Not For Profit Financial Matters

December 17, 2022
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Managing the financial aspects of a non-profit organization can be complicated and at times confusing. In this webinar, Not-For-Profit Financial Matters, presenter Lisa Meacham (Partner, Plante Moran) provides an engaging and educational webinar that discusses: The components of not-for-profit organization finances Understanding what an audit is all about IRS Form 990 Other financial tools Lisa Meacham Lisa Meacham advises not-for-profits on accounting and regulatory changes, provides relevant industry data and benchmarking information, and helps them use financial information to tell their story to stakeholders. Her clients include foundations, educational institutions, health and welfare organizations, arts organizations, professional associations, and government [...] Read more

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

December 12, 2022
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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
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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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CAC2 Childhood Cancer Community News Digest (November 28-December 4)

December 5, 2022
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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
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