Newswise — 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.”
More About HydrocephalusHydrocephalus is a chronic, life-threatening condition that can only be treated surgically. The predominant treatment is the insertion of a small tube, called a shunt, into the brain to drain excess cerebrospinal fluid. Shunts save lives but frequently malfunction, become infected or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries during the course of their lifetime and some individuals have more than 100 surgical procedures. Each surgical procedure brings the risk of unknown long term cognitive and health effects.
The Hydrocephalus Association, the largest advocacy group dedicated to hydrocephalus, is fighting on all fronts to improve the quality of life for people living with the condition. The Vision Dinner is meant to encourage more research, increase public awareness, inspire physicians to specialize in hydrocephalus, and to continue to guide and support people living with the condition.
About the Hydrocephalus AssociationFounded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association is the nation’s largest and most widely respected organization dedicated to hydrocephalus. More than 60 percent of HA's funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. The Hydrocephalus Association's mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition. For more information, visit the Hydrocephalus Association website at www.hydroassoc.org or call (888) 598-3789.###
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