From the CEO: Sowing the Seeds of Exploration into Hydrocephalus

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Dawn Mancuso, CEO Hydrocephalus AssociationAs a gardener, I always look forward with great anticipation to the energizing beauty that accompanies the arrival of spring: crocuses followed by daffodils, signaling the time is right to start digging in the dirt and putting the plan for the vegetable garden into action. This year, however, at least in many parts of the United States, winter lasted a lot longer than usual. Here in Washington, the cherry blossoms were late in blooming, and even now with Memorial Day recently passed, it may be still a little too cool to venture into the outdoor pool. My vegetable garden is really just getting underway.

While I can’t say I waited patiently for spring to come, I found that same energizing beauty in a most unusual place – in the ideas of researchers and conversations that took place at a recent event held by HA.

Titled “Biomarkers in Hydrocephalus Workshop,” this meeting brought together over 30 of the world’s leading experts in biomarkers which was, for this layperson, like watching the first conclave of scientists, NIH/government officials and industry that was responsible for the “discovery” of the internet. You might be wondering what a biomarker is – I was, too. Simply put, a biomarker is a biologic feature that can be used to measure the presence or progress of disease or the effects of treatment. For instance, can we find a protein or a lipid in CSF fluid that could give us some indication of why hydrocephalus exists? Are there neuroimaging biomarkers that could be identified that will tell us definitively when a shunt is failing?

The scientists in attendance freely shared their latest research findings in all populations of hydrocephalus patients – pediatric, transitional and NPH — and their latest thinking on where the next inquiry is most likely to reap new knowledge. They heard from Dr. Jill Morris, Program Director with the National Institute of Neurological Disorders and Stroke (NINDS), who described NIH’s funding mechanisms for hydrocephalus research and some of the latest thinking about evaluation criteria for grant submissions. Participants listened to the “lessons learned” – both good and bad – shared by Dr. Anne Fagan, a world-renowned expert in CSF biomarkers in Alzheimer’s, and Dr. Dan Ory who is well known for his work on biomarkers for Neimann Pick disease. They discussed what kinds of support (organizational and financial) could help them overcome obstacles faced in this line of research. In the words of HA’s Chairwoman Barrett O’Connor, the keys to understanding hydrocephalus in a new way – not just as a “plumbing problem” – lie in this basic science work. And, everyone in the room felt the electricity, the promise, the truly awe-inspiring challenge of discovery that stands before us.

The seeds of exploration were sown in St. Louis at this HA-sponsored workshop. At the risk of carrying the metaphor too far, with careful cultivation and perseverance, one day – hopefully not too far off – this effort will yield a beautiful solution that helps meet the many challenges posed by hydrocephalus.

Special note: I would be horribly remiss if I didn’t publicly thank Dr. David Limbrick, Deanna Mercer and everyone at Washington University in St. Louis for hosting and supporting this important workshop on so many levels – it wouldn’t have been nearly as successful without their commitment to the effort.

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