Author: Joseph Madsen

The birth of ShuntCheck: Family, love, passion, death—and ice

Spencer Neff, Patient #1, during his first ShuntCheck trial, Nov 2002
Spencer Neff, Patient #1, during his first ShuntCheck trial, Nov 2002

The year was 2002, and 10-year-old Spencer Neff was a spunky boy with hydrocephalus, a buildup of cerebrospinal fluid inside his brain. A surgically implanted shunt – a tube to drain the fluid – was in place. Like all children with shunts, he was at risk for having the shunt plug up and malfunction, and he sometimes got scary headaches. But Spencer was lucky to have a neurosurgeon uncle, Samuel Neff, who offered him an interesting proposition:  would you rather be paid to help with some research, or be a scientific collaborator?  Spencer chose the latter.

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When n=2: A Mom’s foray into translational research

The twins' first cyclodextrin infusion bottles. Could this Febreze ingredient halt damage to their brains caused by Niemann-Pick Type C?

“Guess what just happened this afternoon?” It was late September, and Chris Hempel had just received an amazing communication from the Food and Drug Administration, and I got to be among the first to know. She’s not a doc, and not a researcher (in the usual sense), but a Mom out to save the lives and brain function of her identical twin girls. She is a force of nature powering a very small corner of translational research.

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A very narrow bridge: Translational research

“The whole entire world is a very narrow bridge….and the main thing is not to be ruled by fear.”
–Rebbe Nachman of Breslov, 18th century Ukranian Hasidic mystic

My lab studies hydrocephalus, probably the most commonly treated pediatric neurosurgical condition. Most people think hydrocephalus was solved 50 years ago with invention of the shunt. But the kids I see with brain water problems, and their parents, don’t think the challenge is over. They ask: Why do I keep having headaches?

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