All posts by CAC2

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

CC Community News Digest (July 5-18)

Assorted news from the last two weeks: Cures for many rare diseases might already exist. Why aren’t we using them? Patient advocacy groups have long helped researchers find participants for clinical trials and consulted with regulators on pressing needs for their constituents. But they must now play a more active, integral, and permanent role in accelerating — and funding — tomorrow’s innovations. "She died. Our world fractured. It wasn’t so much that we became suddenly, brutally, a family of three. It was more like we unbecame a family of four." The Annual Report to the Nation on the Status of [...] Read more

CC Community News Digest (June 29-July 5)

Assorted news from the last week: Children conceived via assisted reproductive technology (ART) were not at increased risk of developing cancer later on, according to results of a prospective study. More than a third of adolescent and young adult (AYA) cancer survivors reported being hesitant about vaccination against COVID-19 in a survey conducted in Utah and surrounding Mountain West states. The FDA approved a recombinant form of a key component of a chemotherapy regimen for acute lymphoblastic leukemia (ALL), the most common childhood cancer.  The approval of recombinant asparaginase erwinia chrysanthemi-rywn (Rylaze) encompasses treatment regimens for adults and pediatric patients […]

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CC Community News Digest (June 15-28)

Assorted news from the last week: U.S. News & World Report released this year’s rankings of the top pediatric cancer hospitals in the United States. National Cancer Institute Director Ned E. Sharpless assesses how far we’ve come in the fight against cancer in 50 years and how much further we can go in the next 50. New research uncovers substantial differences in rates of childhood cancers when considering single year of age rather than grouping several years together. Study suggests that the chemotherapy regimen used for treating high risk neuroblastoma patients by the European Neuroblastoma Study Group is equally efficacious […]

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CC Community News Digest (June 8-14)

Assorted news from the last week: In a new study led by Yale Cancer Center researchers, neuromuscular dysfunction is found to be prevalent in long-term childhood cancer survivors, continues to increase post-therapy, and is associated with adverse health and socioeconomic outcomes. The findings were published in the journal Cancer, Epidemiology, Biomarkers & Prevention. Research suggests that children with average risk medulloblastoma can receive radiation to a smaller volume of the brain at the end of a six-week course of treatment and still maintain the same disease control as those receiving radiation to a larger area. But the dose of preventive radiation [...] Read more

CC Community News Digest (June 1-7)

Assorted news from the last week: Late Effects Surveillance System-Study Scan is an online publication that follows survivorship issues.  Click here for the latest edition, which includes several abstracts from late-effects research studies. New Research about Ewing Sarcoma: Researchers have discovered a gene, OTUD7A, that impacts the development of Ewing sarcoma, a bone cancer that occurs mainly in children. They have also identified a compound that shows potential to block OTUD7A protein activity. A new discovery in Ewing sarcoma has uncovered the potential to prevent cancer cells from spreading beyond their primary tumor site. Researchers have learned that Ewing sarcoma [...] Read more

CC Community News Digest (May 25-31)

Assorted news from the last week: FDA issues its final guidance on the RACE Act and specifies when sponsors must conduct pediatric studies for new cancer drugs as well as when those requirements can be waived or deferred. CAC2 Supporting Organization Day One Biopharmaceuticals, Inc. (Nasdaq: DAWN), a clinical-stage biopharmaceutical company dedicated to developing and commercializing targeted therapies for patients of all ages with genetically defined cancers, went public and announced the pricing of its initial public offering of 10,000,000 shares of its common stock. Findings from an analysis of patients’ cognitive functioning after treatment of specific extracranial solid tumors [...] Read more

CC Community News Digest (May 10-24)

Assorted news from the last week: Thanks to a funding partnership among CAC2 Members, Spada Pediatric Sarcoma Foundation and Sam Day Foundation created theEwing Sarcoma Research Fund with a starting corpus of $250,000 within the Beat Childhood Cancer Research Consortium.  This fund will help drive genomic sequencing for kids battling Ewing sarcoma, using whole exome sequencing to look at both DNA and RNA to discover tumor pathways and targets with a goal of developing new clinical trials. Children who have blood cancers are less likely to survive after #BMT if their families are low-income compared to children from higher-income families, a [...] 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

Primer on State Cancer Action Plans Training Meeting

State-level advocacy is becoming a big opportunity across the country as it gives advocates another way to get involved in addition to going to DC.  This has been more and more apparent over the last year as people haven't felt comfortable traveling as much. The Coalition Against Childhood Cancer (CAC2) and the American Childhood Cancer Organization (ACCO) co-hosted an online advocacy training meeting focused on State Cancer Action Plans on May 11.  Such plans, mandated by the Center for Disease Control (CDC), articulate the challenges and issues posed by cancer in each state and often include goals, objectives, and strategies [...] Read more