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CAC2 Member Blog–Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

By CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain some of [...] Read more

Invited Blog–Delayed Diagnosis for Children with Cancer

By CAC2 Member Susan Guisto (Friends of Cathryn Foundation) and Guest Blogger Judith G. Villablance, MD, Children's Hospital Los Angeles Every year, approximately 1 in 10,500 children from birth to 15 years of age are diagnosed with cancer in the United States. Most pediatricians will likely encounter only one to three cases throughout their professional lifetime. Even though a pediatrician may never see a case of cancer in his or her practice, it is important to understand what to look for, how to evaluate patients and to ensure follow-up and timely referrals to specialists. As a result, pediatricians can play [...] Read more

CAC2 Member Blog–Joint-Funding Initiative for Ewing Sarcoma

By CAC2 Member Sarah Bartosz, Beat Childhood Cancer This collaborative research effort was due in part to childhood cancer groups coming together as part of CAC2. Nearly one year ago, Gold In September (G9) joined forces with Beat Nb to become Beat Childhood Cancer, a single organization building research infrastructure, funding precision medicine, and growing the conversation to champion gold awareness. With belief in parent impact as a driving force, the expanded Beat Childhood Cancer organization has forged a new collaboration with other CAC2 members. In an effort to find novel ways to support precision medicine efforts, The Spada Pediatric [...] Read more

CAC2 Member Blog–Surveying Parents to Inform Physicians

By CAC2 Member Patti Gustafson, Swifty Foundation For years we looked to medical professionals to tell us what we needed to know to treat our son’s medulloblastoma. We trusted them and we followed their advice. Since 2013, we have been working with families who have lost their child to cancer and we’ve focused our attention on post-mortem tissue donation. In 2017, we held an Investigator’s meeting in Chicago to discuss best practices for the collecting, storing, and sharing of tissue. In 2018, we hosted families from across the country for a Family Forum to discuss their experiences with post-mortem tissue [...] Read more

CAC2 Member Blog–Better Together

By CAC2 Member Carolyn Breinich In 2019, I attended my first CAC2 Summit in Columbus, Ohio.  It was there where Mariah, a 40-year survivor, and I, a 26-year survivor, met, connected, and formed a special friendship. We quickly realized that even though we did not have the same form of childhood cancer and even though we were diagnosed at two very different ages, we had so much in common and we understood how each other felt as long-term childhood cancer survivors. We both agreed that it was wonderful to have someone to talk to, since connections and resources had been limited or non-existent for [...] Read more

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

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

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

CAC2 Member Blog–Lessons Learned from a Childhood Cancer Survivor

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

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

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

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

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