The Vision to End a Condition that is the Leading Cause of Brain Surgery in Children

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The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

New York, NY (October 10, 2017):  The Hydrocephalus Association hosted its annual Vision Dinner in New York City on Friday, October 6th. The evening serves as the central vehicle for supporting a focused research initiative into Post Hemorrhagic Hydrocephalus (PHH), the development of hydrocephalus after a brain bleed. Hydrocephalus is a chronic neurological condition that has no cure and where the only treatment is brain surgery. It impacts over 1 million Americans 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 brought together philanthropists, business leaders, scientists, patient advocates, and doctors for an educational and inspirational program highlighting the innovative research that will lead to the prevention of the development of PHH, the leading cause of brain surgery in children.

“Listening to the scientists this evening share the advances in the lab toward preventing the development of hydrocephalus after a brain bleed or mitigating the injury caused to the brain is inspirational,” stated Vicki Brown, host of the annual Vision Dinner, now in its fifth year, and a mother to a son living with hydrocephalus. “It affirms that we have the capacity to solve this form of hydrocephalus for these children and families.”

The program included an interactive panel of three scientists who shared the state of their current research studies. Dr. Kristopher T. Kahle of the Yale School of Medicine is evaluating how a brain bleed impacts fluid production in the brain, causing the development of PHH. His goal is to identify a new therapeutic target to prevent the development of the condition. Dr. Shenandoah Robinson of Johns Hopkins University is determining if clinically available drugs can enhance the natural repair processes of the brain after a bleed in the hopes of reversing damage. Dr. Jennifer Strahle of the Washington University and St. Louis Children’s Hospital is investigating how blood is cleared from the brain after a bleed, in the hopes of identifying targeted therapies to assist that process and stop the development of hydrocephalus. Complementing the science shared during the evening, Aseem Chandra, Chair of the Hydrocephalus Association Board of Directors, and Melissa Kopolow McCall, this year’s Vision Dinner Inspirational Award recipient, shared their personal stories as parents of infants impacted by the condition.

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. “Two years ago through the Vision Dinner, we launched 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. We are proud to announce that we are more than two-thirds of the way to our goal. This is allowing us to aggressively tackle the various forms and underlying causes of hydrocephalus, and our panelists tonight showed the advances we are making,” said Craig Brown, Senior Vice Chair, Hydrocephalus Association Board of Directors.

The success of the Hydrocephalus Association Research Initiative, supported in part by the generous contributions made through the Vision Dinner, is reflected in the recent wins for research into the condition. This past July, Dr. Bonnie Blazer-Yost of Indiana University and Dr. Jerold Chun of the Scripps Research Institute, received grants from the Department of Defense’s Congressionally Directed Medical Research Programs totaling $2.4 million. Both scientists received modest seed grants from the Hydrocephalus Association that allowed them to develop their research hypotheses and critical supporting data for the purpose of ultimately applying for these larger public funds. In addition, Dr. John Zhang from Loma Linda was awarded a $1.7 million National Institutes of Health (NIH) grant for post hemorrhagic hydrocephalus research. Dr. Zhang previously spoke at the 2016 PHH Workshop that the Hydrocephalus Association hosted with NIH, and Dr. Yan Ding, a member of Dr. Zhang’s lab, was a 2017 Hydrocephalus Association Innovator Award recipient featured at this year’s dinner.

“Our vision is a world without hydrocephalus,” stated Craig Brown. “The recent grants awarded to continue the ground-breaking work of these scientists is a powerful example of how, by early investment in the most promising research, we are helping to make this a reality.”

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 private funder of hydrocephalus research and 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.

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