Poppy was just shy of her fifth birthday when she started experiencing pain in her legs, increasing lethargy and a diminished appetite. As her leg pain worsened, her mother called Poppy’s primary care provider to request an appointment. The doctor ran blood tests and sent the family home. Days later, Poppy’s mom, Claire, received a…

Diffuse intrinsic pontine glioma (DIPG) tumors are extremely difficult to treat due to their anatomical location. But advancements in research and greater DIPG awareness are leading to more hope for patients with this type of rare pediatric brain tumor. This article covers the basics of DIPG cancer, what advancements in research mean for patients, and…

When pediatric cancer patients are fighting for their lives, parents have to stay laser-focused on the here and now. As a result, there is often little room for thoughts about the late effects of cancer treatment on children— including fertility preservation for cancer patients. But according to Dr. Sogol Mostoufi-Moab, MD, MSCE, a dual-certified pediatric…

CME (Continuing Medical Education) sessions or activities serve to maintain, develop, or increase the knowledge, skills, and professional performance and relationships that a physician uses to provide services for patients, the public, or the profession. SKC occasionally participates in sponsored CME sessions for researchers and healthcare professionals. The following sessions may be of interest to parents.…

Having a child with rare cancer that has no established treatment protocol can leave you feeling like you have nowhere to turn. But as science continues to progress, new and innovative cancer treatments are becoming more available. These treatments are called orphan drugs, and in this article, we explain what they are, how the US…

Clinical trials are a vital part of scientific research. When a researcher is developing a new therapy or treatment, clinical trials are how they make sure it’s safe and effective before it can become widely available. Oftentimes, a clinical trial is used to learn if a new treatment has less harmful side effects than the…

Lara Cady Weberling is a writer, childhood cancer advocate, and a member of the New Approaches to Neuroblastoma Therapy (NANT) consortium parent advisory panel. At a recent international parent symposium, she expressed the role hope played for her family during her son’s fight against neuroblastoma, and what it means to her today.   Our son,…

It’s hard to imagine what it’s like to be a caregiver for a kid with a rare childhood cancer unless you’ve actually been one. Cindy Campbell, mom of three boys, didn’t know anything about the role until she suddenly had to take it on when her oldest son, Ty, was diagnosed with ATRT, a rare…

  Last year, over 700 parents, medical professionals, charity leaders, and industry representatives from 46 countries joined the first-ever Neuroblastoma Global Parent Symposium, tuning in to hear the latest on neuroblastoma research, care, and survivorship from the world’s leading experts. On November 5 and 6, the top neuroblastoma conference for parents will be back with…