Member Blogs

October 18, 2021 Member Blogs

CAC2 Bioethics White Paper Accepted at SIOP 2021 (on Saturday, October 23rd)

Access to the most promising pediatric cancer treatments is often achieved by participating in clinical trials. And private, nonprofit organizations have become a significant source of funding for these trials that are often left behind by industry. Drug development for pediatric cancer has expanded in recent years because nonprofits are stepping up. But federal reporting standards do not apply to nonprofits leaving them to try their best and hope for the best. This lack of formal oversight raised questions for a number of CAC2 members about the ethical, legal, and social commitments between non-profit funders and the patient communities they [...] Read more

October 1, 2021 Blog Posts, Guest Blogs, Member Blogs, Survivorship Matters Blog

Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

By Guest Blogger 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 [...] Read more

July 29, 2021 Blog Posts, Guest Blogs, Member Blogs

Delayed Diagnosis for Children with Cancer

By Guest Bloggers CAC2 Member Susan Guisto (Friends of Cathryn Foundation) and 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

May 17, 2021 Blog Posts, Collaborative Achievements, Member Blogs

CAC2 Members Launch Joint-Funding Initiative for Ewing Sarcoma

By Guest Blogger CAC2 Member Sarah Bartosz 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 Sarcoma Foundation is spearheading the creation of a Ewing Sarcoma Precision Medicine Research Fund within the Beat Childhood [...] Read more

April 6, 2021 Blog Posts, CAC2 News, Member Blogs

Presenting Mandy Spielvogle Powell, CAC2 Managing Director

By Guest Blogger CAC2 President Vickie Buenger At our January 2020 board retreat in Philadelphia, the CAC2 Board of Directors began what will ultimately be an 18-month leadership transition, carefully designed to ensure long-term sustainability of the organization. In March 2020, we presented our draft succession roadmap to all of you during the All-Member Webinar, and we have made every effort to keep you apprised of this process over the past year. We are now at the 14-month mark of this succession work and have exciting news to share: We have selected and hired CAC2’s first Managing Director! This thorough, thoughtful process was […]

January 31, 2021 Blog Posts, Member Blogs

Surveying Parents to Inform Physicians

By Guest Blogger CAC2 Member Patti Gustafson 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

December 1, 2020 Blog Posts, Member Blogs

Better Together

By Guest Blogger 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 [...] Read more

November 16, 2020 Blog Posts, Community News, Member Blogs

Don’t let HOPE die in the US Senate!

By Guest Blogger 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 [...] Read more

September 18, 2020 Blog Posts, Member Blogs

An Estimate of the Long-Term Outcomes for Children with Cancer

By Guest Blogger 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, [...] Read more

August 8, 2020 Blog Posts, Member Blogs

Lessons Learned from a Childhood Cancer Survivor

By Guest Blogger, 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. [...] Read more

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