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CAC2 Member 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

Guest Blog–How Collaboration is Advancing Research and Clinical Care in Pediatric Cancer

By Guest Blogger Dr. Lynne Davies, Operations Manager, International Cancer Research Program   It is with great excitement that I write to let you know about the upcoming webinar scheduled for Monday, April 19th at 10am ET, which aims to capture the very essence of why the International Cancer Research Partnership (ICRP) was created.   ICRP is a unique alliance of cancer organizations working together to enhance global collaboration and strategic coordination of research.  This webinar, entitled “How collaboration is advancing research and clinical care in pediatric cancer,” is jointly organized by ICRP, National Cancer Research Institute Children’s Group and Events […]

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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

Guest Blog–Let’s Fight This with Food

By Guest Blogger Hilary Woo, Dietetic Intern, Texas Woman’s University Fighting with food has been a motto that I’ve had ever since deciding to pursue a career as a registered dietitian. In fact, the moment I decided to be a dietitian was during a volunteer program in high school at the MD Anderson Cancer Center. I’ve always known that I wanted to work in pediatrics in some field whether it be as a nurse, doctor, dietitian, teacher, etc. However, MD Anderson helped me to find my passion in nutrition, and for that reason as well as personally being impacted by cancer through family members, I’ve […]

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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

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

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

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