November 2016

“Data can be immortalized forever, and that’s a legacy that patients and families leave behind when they choose to contribute to research in the face of serious and sometimes lethal diseases. It is our responsibility as partners in research to honor that legacy to support discovery of new treatments and new cures for childhood diseases.”- Adam Resnick, PhD

Linking Patients and Data, Medicine and Science: CAVATICA Data Analysis Platform Launches


When describing his latest effort to make breakthroughs for children with cancer, Adam Resnick, PhD, places it in the context of history. In their origins, science and medicine were once entirely separate disciplines, he notes. Science, an erudite pursuit to unlock the universal truths of …

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Untangling Attention Difficulties in Autism


Benjamin Yerys, PhD, is a psychologist trying to unravel a problem that, up until a few years ago, did not officially exist. Prior to the publication of the most recent fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the official party …

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Coming Full Circle: Sickle Cell Expert Lays Foundation for Progress in Ghana


“You make a new arrow by comparing it to an old one,” is a Ghanaian proverb about lessons learned that seems quite fitting as Kwaku Ohene-Frempong, MD, Director Emeritus of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia, spearheads a transformative project to …

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Smart Robotic Toy Gym Could Identify Early Signs of Babies’ Developmental Delay


The wriggling supine baby reached up toward the jungle-themed play gym that arced above her and grabbed a dangling elephant by the trunk. As she squeezed it, the elephant squeaked. She smiled, released, and grabbed the elephant again, this time joining in with a happy …

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Leukodystrophy Research, Advocacy Mission Critical for New Program Director


A special space is open on the walls of Adeline Vanderver, MD’s, new office for a framed collage of “Commander” Massimo “Mo” Damiani, a toddler wearing an orange jumpsuit who looks ready to join a NASA astronaut team. Dr. Vanderver, a child neurologist and geneticist, …

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Cellular Energy Flaws Studied as Contributor to Schizophrenia


The brain is an energy hog, consuming more energy than any other single organ despite its small size relative to the rest of the body. Scientists are increasingly considering the possibility that subtle defects in energy consumption could help explain some neurological and neuropsychiatric diseases …

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A ‘Critical Mass’ of Mitochondrial Disease Research Accelerates Treatment Quest


If your child had a serious and complex disease, one that affected multiple organs and systems — perhaps impairing her growth, her ability to move, her liver function, her vision, her heart, her brain, or a combination of several or all of these with progressive …

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‘Adulting’ Gets Complicated During Shift From Pediatric to Adult Medical Care


A new word is catching on to describe the sometimes overwhelming life stage of learning to behave like a grown-up: “adulting.” For youth with chronic diseases, adulting has complexities beyond coming to grips with doing their own laundry. They must transition to a new system …

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