CC Community News Digest (week of August 10-16)

August 16, 2020
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Assorted news links from the last week: INCB, WHO and UNODC Statement on Access to Internationally Controlled Medicines during COVID-19 Pandemic FDA Issues Complete Response Letter for Pedmark  An important step forward for mitigating the risk of life-long hearing loss caused by cisplatin AML Survivors at risk for psychosocial impairment Another study from the Childhood Cancer Survivor Study Beirut blast disrupts cancer care for children NPR reports on the wide range of damage from the explosion in Beirut More news about DIPG:  Discoveries point to a new potential treatment approach For childhood cancer survivors, exercise intolerance predicts a range of other health [...] Read more

CC Community News Digest (week of August 3-9)

August 9, 2020
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Assorted news links from the last week: Study Offers Insights on Health Problems among AYA Cancer Survivors Medical trial aims to identify those at risk of heart damage following cancer treatment Australian researchers taking a very broad look at the effect of cancer treatment on heart health. Racial Disparities in Pediatric Cancer Treatment: Black Children Less Likely to Receive Proton Radiotherapy, Forbes US FDA Grants Rare Pediatric Disease Designation (RPDD) to Paxalisib for DIPG, a big win for the Creating Hope Act (which needs to be permanently reauthorized by the end of September) Risk-Stratified Therapy Reduces Late Morbidity, Mortality in Pediatric [...] Read more

CAC2 Member Blog–Lessons Learned from a Childhood Cancer Survivor

August 8, 2020
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By CAC2 Member Mariah Forster Olson, Neuroblastoma Children's Cancer Society As a long-term childhood cancer survivor with numerous late effects, I have had 39 years of experience in the medical field…as a patient.  As many of us know, life consists of doctor appointments, blood work, diagnostic tests, procedures, surgeries, and more.  All of this can be incredibly difficult, exhausting, and depressing, but I have learned some important and valuable life lessons as a childhood cancer survivor. On June 6, 1980 at the age of one, doctors found a large tumor that occupied the entire right side of my chest.  The tumor [...] Read more

International Society of Pediatric Oncology (SIOP) Moves Congress Online

August 3, 2020
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On behalf of the International Society of Paediatric Oncology (SIOP), please note that SIOP 2020 will take place as a virtual congress on the same dates: October 14-17, 2020.  Additionally, Late-Breaking Abstract Submission is open until August 26, allowing everyone to share their research from wherever they are based.   SIOP 2020 Virtual Congress October 14-17, 2020 www.siop-congress.org   In light of the continuing uncertainty about the evolution of the COVID-19 pandemic, we have decided to transform SIOP 2020 into a virtual congress, taking place on the same dates: October 14-17, 2020. With updated registration rates starting from EUR 25, […]

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Childhood Cancer and Prevention – The Time is Now

July 29, 2020
Blog Posts, Survivorship Matters Blog No comments yet
Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to the idea of prevention and childhood cancer didn’t come from a yearning for advocacy and systems change. It also didn’t come years after my son was diagnosed, with a desire to help other parents learn how to nurture healthier environments for their children. It was thrust upon me during my son’s neuroblastoma treatment, by prospective buyers of our house. Somehow, they not only found out that my son was in cancer treatment, but they also found out the type of cancer he had. The couple had researched environmental toxins [...] Read more

CAC2 Member Blog–Joining Forces to Bring New Therapies to Children with Cancer

July 26, 2020
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By CAC2 Member Cesare Spadoni (aPODD).   “Pharma and biotech companies do not develop drugs for kids with cancer!” How many times have we heard these words within the childhood cancer community? Over the past several decades we have witnessed unprecedented progress in oncology, with an array of innovative and more targeted treatments reaching cancer patients. However, these scientific advances have only partially benefited younger patients. The pharmaceutical industry, in strategic pursuit of bigger financial returns, has traditionally focused on adult oncology indications. As a result, over the past 30 years more than 200 new drugs have been approved by [...] Read more

CAC2 2020 Annual Summit

July 16, 2020
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Over 100 CAC2 members and guests gathered for a special online event on Friday, July 17, 2020 to attend our 8th Annual Summit Speaker Program and Annual Members' Business Meeting.   Our volunteer Meetings Team designed a carefully curated two-hour version of our traditional Annual Summit accessible to all. Dr. Doug Hawkins, newly elected Chair of the Children’s Oncology Group, speaking on his vision for COG, with Q&A on how parent patient advocates fit into that vision and The RACE Act on the Eve of Implementation Panel, a conversation moderated by Dr. Stacey Adam (FNIH) featuring Dr. Malcolm Smith (NCI), Dr. Martha Donoghue (FDA), [...] Read more

Community News: Update on Federal Childhood Cancer Appropriations Process

July 15, 2020
Community News No comments yet
Update from our colleagues at the Alliance for Childhood Cancer (July 13, 2020): The House Appropriations Committee agreed to fully fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative again this year. Notably, the Senate has historically championed our cause for STAR funding, so this development in the House shows an even stronger commitment from Congress for our research priorities. This step is important to our requests being included in the final appropriations package when Congress considers the next budget. Here are some key sections related to childhood cancer:   STAR Act – The Committee includes no [...] Read more

CAC2 Member Blog–New Report to be Released: Cross-Sector Strategies for Childhood Cancer Prevention

July 11, 2020
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By CAC2 Member Jonathan Agin, Max Cure Foundation I frequently speak of viewing childhood cancer like a bicycle wheel with multiple spokes emanating from the hub in the center.  Each spoke represents a problem or area of focus:  drug development, psychosocial care, early detection, survivorship, research funding, access to treatment, financial toxicity.  Etc., etc.  The spokes of the childhood cancer wheel are interwoven.  Participating in groups like CAC2 allows us to see how interconnected everything in childhood cancer really is. With that said, one area has not truly been intertwined with the other spokes.  This is the issue of prevention, and specifically, prevention of childhood cancer.  Rising [...] Read more

Five Categories of Childhood and Adolescent Cancer Survivorship

July 1, 2020
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The CAC2 Survivorship Working Group assembled this document to help categorize survivorship issues for the community.  It is by no means an exhaustive list, but it gives examples of some of the challenges that survivors face in each of the categories that our group has identified.   EDUCATIONAL: Academic Success – how to achieve it, partner with the schools, how a family can encourage it from home Core Competencies – Prepare and Share with School Counselors, Educators, School Nurses, Doctors, Child and Adolescent Therapists, etc. Developing plans to help students Individualized Education Program (IEP) vs. 504 Plan Emphasize plans need to […]

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