Scientists are focusing in on promising research aimed at finding a cure for hydrocephalus; and a new initiative funded by the Hydrocephalus Association, the largest private funder of hydrocephalus research in the United States, is uniting these researchers to accelerate their progress.
Hydrocephalus, which affects more than 1 million Americans of all ages, is caused by an abnormal accumulation of cerebrospinal fluid in the brain. The only treatment requires brain surgery, and repeated surgeries are often needed due to high failure rates of the predominant treatment—the insertion of a medical device called a shunt into the brain. Left untreated, it's life-threatening.
This October, the Hydrocephalus Association will use its annual Vision Dinner as a major fundraising drive to provide $500,000 to support HA's Network for Discovery Science (HANDS) which will centralize and solidify the field of research by bringing together the brightest minds into a single virtual lab. The Association is also providing access to grants to kick-start and test potential research leads. HANDS, which will launch in the fall of 2015, will accelerate the development and implementation of innovative, cure-focused ideas, providing researchers with access to the tools, specimens and the expertise of scientists and clinicians around the globe.
HANDS will support and promote basic scientific efforts to understand the causes, consequences and complications of hydrocephalus as well as to identify mechanisms that lead to its prevention or cure. Benefitting from shared infrastructure from top institutions around the country, forward-thinking researchers will be able to test their hypotheses at an accelerated pace. In its current state, the field of hydrocephalus research is small and scattered. Ideas with potentially field-altering implications are being left on the table because researchers do not have the necessary tools to perform studies, and collaborations are slow to form.
HANDS will also provide seed grants to researchers who have promising theories in developing a cure for hydrocephalus. These seed grants enable scientists to obtain the preliminary data needed to be competitive for the larger NIH grants—which are highly selective. Hydrocephalus is as common as Down syndrome, but receives only 1/30th the public research funding. Similarly, both hydrocephalus and Parkinson's afflicts a comparable number of Americans, yet Parkinson's receives $135 million in funding, and hydrocephalus receives $6 million, according to the NIH.
Olivia Maccoux, a 19 year old woman who has undergone over 120 brain surgeries due to hydrocephalus, is an extreme but not rare example of the results of the condition. Research, such as the work done by Dr. Jerold Chun, MD, PhD, whose landmark discovery of a significant factor in the development of hydrocephalus in newborns, could lead to a medical treatment that would have prevented Olivia's hydrocephalus and resulting surgeries.
Dr. Chun will be the keynote speaker at the 2015 Vision Dinner in New York, with the theme, A Time for Awareness | The Hope of a Cure. The event gathers families, researchers, philanthropists, business leaders and advocates to learn about promising research and to provide the opportunity to celebrate community members helping to make a difference. The evening is underwritten by Craig and Vicki Brown, generous benefactors who have a son with hydrocephalus, to ensure every dollar donated is allocated to advance hydrocephalus research.
"Treatment is not a cure. We must accelerate the development and implementation of innovative, cure-focused ideas," said Craig Brown, Senior Vice Chair, Hydrocephalus Association Board of Directors, "It is a healthcare crisis—current treatment is woefully inadequate and the cost of treating hydrocephalus exceeds over 2 billion dollars per year in hospital charges alone."
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