It’s been a big year for 8-year-old Drew Norton and his family.
Clinicians at the Children’s Hospital of Philadelphia Leukodystrophy Center diagnosed Drew with a rare genetic disorder nearly 12 months ago. Since then, Drew and his parents, Christy and Jason, have embarked on what they now call an “amazing run.” After years of misdiagnoses, they finally learned that Drew’s difficulties with movement and speech were caused by a specific leukodystrophy, a group of disorders that affects white matter in the brain. Though the Nortons are still learning more about the disorder and how best to manage it, the diagnosis has served as a baseline for a series of victories, both big and small.
A new website developed by a team at Children’s Hospital of Philadelphia is giving parents the opportunity to engage in a dynamic conversation about adolescent sexual health, and not just with teens, but with fellow parents and experts in adolescent medicine across the online community, too. Parents Are T.A.L.K.I.N.G (PAT) which stands for “Teaching A Lifetime of Knowledge About Sexuality in the Net Generation”, was developed to improve adolescent reproductive health by helping parental caregivers learn new skills and information in a convenient and reliable way.
Editor’s Note: Childhood brain tumors remain some of the most difficult to treat cancers, especially because of current therapies’ long-term side effects for the survivors. In honor of Brain Tumor Awareness Month, Adam Resnick, PhD, director of the Center for Data-Driven Discovery in Biomedicine (D3b) at Children’s Hospital of Philadelphia, is our guest blogger. He brings us up to date on how the CHOP-led consortia, working with patients, families, and partnering institutions, has witnessed first-in-kind initiatives and innovative clinical trials aimed at personalized, precision-based approaches for brain tumors that are redefining the scientific landscape of research and therapeutic translation.
Leading-edge neuroscience techniques are facilitating Children’s Hospital of Philadelphia researchers’ better understanding of how the brain controls bladder function, and their novel insights have earned them special recognition from the neurourology community.
Jason Van Batavia, MD, a urologist and physician-scientist in the Division of Urology at CHOP, is the grand prize winner in the 2018 Diokno-Lapides Essay Contest. His manuscript described a research project focused on optogenetic stimulation of specific neurons in a section of the brainstem called Barrington’s nucleus, which scientists think is an important “command center” for controlling voiding (urination).
In our latest roundup of Children’s Hospital of Philadelphia research headlines, learn how our investigators took their discoveries from the bench to the bedside (and beyond), gaining local and national recognition for their hard-earned advances in interventional cardiology practice, asthma management, multiple sclerosis (MS), and more. On top of that, we give you updates on April’s successful Walk for Hope and share our excitement for this Saturday’s Eagles Autism Challenge — two fun-filled family events that illustrate just how much scientific breakthroughs rely on both the community and our scientists.
The Division of Neonatology at Children’s Hospital of Philadelphia celebrated the remarkable research careers and retirement of two pioneers in neonatal research and medicine, Barbara Schmidt, MD, and Haresh Kirpalani, MD, with a clinical research symposium May 9 and 10. Held at the Union League of Philadelphia, the event brought together the world’s leading experts in neonatal research and evidence-based medicine, many of whom have worked closely with Drs. Schmidt and Kirpalani as trainees, co-authors, and colleagues in the last few decades.
Clinical research coordinators are the heart and soul of our research breakthroughs, as many of our investigators and staff at Children’s Hospital of Philadelphia know. Whether they’re ensuring that a study falls within regulatory protocols, explaining the science behind a health condition to a family, or simply spending time with patient participants to put them at ease, coordinators bridge the gap between an idea and its execution, as well as between scientists and the patients whose outcomes they hope to improve.
Editor’s Note: In his career as a social psychologist, Douglas Hill, PhD, focuses on understanding how parents, children, and healthcare providers think about and cope with stressful health situations. For the past six years, Dr. Hill has worked with an interdisciplinary team in the lab of Chris Feudtner, MD, PhD, MPH, on research topics including hopeful thinking among parents of children with serious illness, regoaling, good parent beliefs, coping skill interventions for parents, barriers to initiation of palliative care among pediatric oncologists, the impact of pediatric illness on families, and identifying pediatric patients who are unable to communicate.