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Pediatric Brain Tumor Community Chat Recap

National Brain Tumor Society held its second Community Video Chat on September 23, 2014, focused on the topic Pediatric Brain Tumors: Resources and Research. Our Chat line-up of experts spoke about pediatric brain tumor research, pediatric clinical trial participation, treatments, and addressing childhood brain tumors as a parent.

Carrie Treadwell, National Brain Tumor Society’s Chief Research Officer, began by presenting our work in pediatric brain tumor research and drug development. National Brain Tumor Society has made a commitment to allocating one-third of its research funding to pediatric brain tumor projects. In her segment, Carrie described the organization’s pediatric initiatives, funded research, and our newest effort to overcome the barriers to pediatric cancer treatments, Project Impact.

For more, view Carrie’s entire video segment, including Q & A.

Dr. Suzanne Baker, Ph.D., faculty at St. Jude Children’s Hospital and Co-Leader of the Neurobiology and Brain Tumor Program at the hospital, was our second guest. Dr. Baker’s research is focused on a set of aggressive childhood brain tumors known as pediatric high-grade gliomas. Research groups around the world are studying childhood brain tumors and comparing them to adult brain tumors to find out if the cause is the same in adults as in children. She spoke about her research, highlighted the most exciting findings of the last few years, and answered many questions from viewers.

For more, view Dr. Baker’s entire video segment, including Q & A.

Our third expert on the Community Chat was Dr. Scott Pomeroy, M.D., Ph.D. Dr. Pomeroy is the Chair of the Department of Neurology at Boston Children’s Hospital, and the Director of Intellectual and Developmental Disabilities Research Center at Harvard Medical School. Dr. Pomeroy spoke about how he realized the great need to understand brain tumors once he began to take care of children with the disease. A focus of his research concerns embryonal brain tumors, which are malignant brain tumors that have very different types of growth properties. He spoke about the most interesting findings in the past five years, and the challenges of bringing these discoveries into clinical practice.
Dr. Pomeroy also shared information related to strategies for treating tumors, how clinicians are beginning to incorporate targeted new therapies, and questions that families may want to ask their neurologist about treatments, clinical trials, and institutions. His key advice for families: establish a great team, get second opinions, and filter what you find online through a knowledgeable person.

Click here to view Dr. Pomeroy’s complete video chat segment, including Q & A.

Our final expert was Jaime Banks, mother, and pediatric brain tumor advocate. Her son was diagnosed with a malignant brain tumor at age 10, and since then Jaime has become a dedicated advocate of brain tumor awareness and research funding. She shared her son’s story, and how that became her family’s story. Jaime culled a list of resources from among other parents, which she called her “Top Ten Best List of Advice for Brain Tumor Parents.” Her Top Ten List includes resources about fertility options, online support for parents, resources and conferences for teens, caregiver resources, and whole family support.

Jaime’s entire video segment, which includes her Top Ten List and chat Q & A, may be viewed online.

Her Top Ten List is part of the overall Community Chat resource list.

Thank you to everyone who participated in our pediatrics Community Chat. We are especially grateful to our guests: Jaime Banks, Carrie Treadwell, Dr. Suzanne Baker, and Dr. Scott Pomeroy for donating their time and expertise to the brain tumor community. All resources mentioned during the video Community Chat, with descriptions and links, may be accessed and viewed online. If you would like to be notified of upcoming community chats, please sign up for notifications.

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