Families Unite with Scientists to Prevent Leading Cause of Brain Surgery in Children

The Hydrocephalus Association’s annual Vision Dinner will serve as the catalyst for a focused research initiative that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

On October 14, the Hydrocephalus Association, the largest private funder of hydrocephalus research in the U.S., will hold its annual Vision Dinner in New York City. The evening will serve as a catalyst for a focused research initiative into Post Hemorrhagic Hydrocephalus (PHH), the development of hydrocephalus after a brain bleed. Hydrocephalus is the leading cause of brain surgery in children and PHH is the most prevalent form of pediatric hydrocephalus, disproportionately impacting premature infants and relegating children to a lifetime of brain surgery as well as educational challenges.

The evening will host researchers, philanthropists, business leaders, patient advocates, and family members to learn about promising PHH research and to celebrate community members helping to make a difference. The dinner will also launch a $3,000,000 three-year campaign to raise crucial funds to direct the association’s extensive research capabilities to find a cure for PHH.

“Children who develop hydrocephalus from a brain bleed are our most vulnerable population. They are at higher risk for repeated brain surgeries and infections. Seventy percent develop epilepsy,” stated Vicki Brown, host of the annual Vision Dinner, now in its fourth year, and a mother to a son living with hydrocephalus. “One-quarter of children with hydrocephalus have PHH. We have the current capacity to solve this form of hydrocephalus for these children and families and that is why we have launched this campaign.”

Last year, the Hydrocephalus Association (HA) completed the creation of a research infrastructure that supports collaboration and innovation between scientists and clinicians to streamline the movement of new therapies and interventions from the lab to the hydrocephalus patient population. Now a new HA initiative leverages a unique partnership between the newly launched HA Network for Discovery Science (HANDS), the focus of last year’s Vision Dinner, and the two established hydrocephalus-focused Clinical Research Networks. The initial priority of the new project is to find a cure for PHH.  This will be achieved by taking the most promising research from a pool of PHH studies currently being funded by the Association and moving it through the pipeline towards clinical applications for patients.

Research to date is promising. David Limbrick, MD, a principal investigator for HANDS, is pinpointing unique markers in the cerebrospinal fluid of current patients that could lead to early identification and treatment of patients at risk for developing PHH. Dr. Limbrick will be the keynote speaker at the 2016 Vision Dinner, which will take place at the Mandarin Oriental in New York City. The evening, with the theme, A Time for Awareness, The Hope of a Cure, will also acknowledge the contributions of three individuals for their tireless dedication to working toward eliminating the challenges of hydrocephalus through their affiliation with the Hydrocephalus Association. The event will honor Michael A. Williams, M.D., Professor of Neurology and Neurosurgical Surgery, University of Washington School of Medicine, recipient of the Service Award; James Spence, Sergeant First Class (retired), United States Army, who developed PHH from a brain injury sustained while serving in Iraq, recipient of the Leadership Award; and Olivia Maccoux, a college student and outspoken advocate who has undergone over 120 brain surgeries due to PHH, recipient of the Inspiration Award.

The evening is underwritten by Craig and Vicki Brown, generous benefactors to the Hydrocephalus Association, to ensure every dollar donated is allocated to advance hydrocephalus research. “The project allows us to aggressively tackle the various forms and underlying causes of hydrocephalus,” said Craig Brown, Senior Vice Chair, Hydrocephalus Association Board of Directors. “Our vision is a world without hydrocephalus and we hope that by investing in the most promising research, this will become a reality.”

The event will be held on Friday, October 14, 2016, at the Mandarin Oriental in New York City. For more information about the event or about hydrocephalus, please contact communications@hydroassoc.org.

More About Hydrocephalus

Hydrocephalus, which affects over 1 million Americans of all ages, is caused by an abnormal accumulation of cerebrospinal fluid in the brain. There is no cure and the only treatment requires brain surgery. Repeated brain 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. It is not uncommon for children with hydrocephalus to have more brain surgeries than birthdays. Infants with PHH are an extremely vulnerable population, more likely to suffer from intellectual disabilities and the co-occurrence of epilepsy and cerebral palsy.

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 Association

Founded 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.