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CAC2 Member Blog–Don’t let HOPE die in the US Senate!

November 16, 2020
Blog Posts, Community News, Member Blogs 1 comment
By CAC2 Member Joe Baber If the Creating Hope Act (S. 4010) does not pass the Senate by December 11, THIS YEAR we will lose the best tool we have ever had to inspire drug developers to produce Childhood Cancer and Rare Pediatric Disease drugs. This bill has produced 26 drugs in the last eight years, including two childhood cancer drugs. This is half of the four drugs ever approved specifically for childhood cancer. Because of the incentives in this bill, for the first time, we now have several kids’ cancer drugs in development.  We cannot allow this bill to die on the Senate floor!  The House passed a version [...] Read more

CAC2 Member Blog–An Estimate of the Long-Term Outcomes for Children with Cancer

September 18, 2020
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By CAC2 Member Bob Piniewski, People Against Childhood Cancer Childhood cancer statistics, like all statistics (1), can be confusing.   Any statistic can be used to hide or distort the truth, and even the statistics we trust may only tell part of the story. This essay analyzes some familiar childhood cancer statistics and attempts to draw them together in a holistic way to estimate the projected lifelong outcomes for a child diagnosed with childhood cancer in the United States today.  By lifelong outcomes, we mean what may happen over that child’s entire life--not just today or in five years, but 10, [...] Read more

Guest Blog–September 9 Virtual Day of Action: How to Get Involved

September 9, 2020
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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 Today is the day! The childhood cancer community is joining together today to use our collective voice to build support for funding for the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill ever. Advocates across the childhood cancer community are writing to their members of Congress, posting on social media, and spreading the word to their networks about today’s Virtual Day of Action. If your organization would like to participate, please use these materials so [...] Read more

Guest Blog–Virtual Day of Action: Join Together on September 9

August 28, 2020
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 For nearly 10 years, childhood cancer advocates from around the country have come to Washington, D.C. to participate in the Childhood Cancer Action Days.  Action Days brings our community together to advocate for important childhood cancer issues currently before Congress.  As a result of our advocacy, we have seen many important childhood cancer policies, like the Childhood Cancer STAR Act, become law.  Due to the COVID-19 pandemic, our plans for Action Days had to change this [...] 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

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 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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Guest Blog–Kids First Second Chance: Engaging the Community in Fostering Pediatric Genomics Research

March 2, 2020
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By Guest blogger Valerie Cotton, Kids First Program Manager, NICHD Childhood cancers and structural birth defects have profound, lifelong effects on children and their families. Birth defects are the leading cause of death in the first year of life, and cancer remains the leading cause of childhood disease-related mortality beyond the first year of life, according to the Centers for Disease Control and Prevention. Moreover, a child born with a birth defect is at a higher risk for childhood cancer, suggesting these conditions may be caused by shared genetic pathways. However, limited data and resources are available to investigate potential genetic [...] Read more
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