HA Launches Nation’s First Hydrocephalus Patient-Powered Registry
In 2018 we launched HAPPIER – the first hydrocephalus patient-powered registry. HAPPIER was created for our community to provide input to scientists about how hydrocephalus impacts their daily life. The information collected will help paint a clearer picture of the condition and its effects on patients and caregivers. This rich source of data will also inform critical research, potentially leading to discoveries in the underlying causes of the condition, intervention strategies for preventing the condition, improvements in diagnosis, and/or alternative treatments.
Inspired by their son Joseph, who developed hydrocephalus as a baby, Chris and Angela Batterman have been loyal partners of the Hydrocephalus Association for many years.
In 2018, their family foundation made a major grant to support our research efforts to prevent the development of postinfectious hydrocephalus (PIH), a form of hydrocephalus that develops as a result of a brain infection.
We are grateful for their support and the grant from the Theodore W. Batterman Family Foundation.
Chris and Angela Batterman
Theodore W. Batterman Family Foundation
“Research for Post-infectious Hydrocephalus is near and dear to our hearts because our son acquired hydrocephalus after an illness he experienced as an infant. One of the main causes of hydrocephalus globally is Post-Infectious Hydrocephalus. Our greatest hope is that by understanding the mechanisms behind this etiology, a noninvasive treatment and ultimately a cure may soon be discovered.”
8 Scientists Awarded Grants for Hydrocephalus Research
At the heart of our Research Initiative is our grant making program. In 2018, eight scientists were awarded research grants totaling $1.65 million. These scientists are testing innovative new theories, drugs and interventions to prevent and stop the development of posthemorrhagic hydrocephalus (PHH), a common type of hydrocephalus among children that develops after a brain bleed; and postinfectious hydrocephalus (PIH), which develops as a result of an infection.
Diana Gray, President and CEO
Hydrocephalus Association
“Since 2009, we've funded the best and brightest. These scientists have the potential to transform the field of hydrocephalus. Our scientists and clinical networks have gone on to secure larger grants totaling more than $32MM! We are so thrilled to see our research program experience this resounding success and an impressive return on our investment.”
HA-funded Researcher Awarded $1.8 Million Grant
When researchers who have received seed grants from us go on to win much larger grants to further their hydrocephalus research we consider it a success story. Dr. Kristopher Kahle, Assistant Professor of Neurosurgery and Pediatrics at Yale School of Medicine and Director of Neonatal and Congenital Anomaly Neurosurgery in the Division of Pediatric Neurosurgery, is our latest success story. In 2018, Dr. Kahle received a National Institutes of Health (NIH) grant worth $1.8 million over five years, allowing him and his research team to dig deeper into new theories on why posthemorrhagic and postinfectious hydrocephalus develop and test drugs to prevent or minimize hydrocephalus after a brain bleed or infection. Dr. Kahle was awarded our Innovator Award twice – first to study posthemorrhagic hydrocephalus (PHH) and then to study postinfectious hydrocephalus (PIH). He was also awarded our Discovery Science Award in 2018 for his PIH research.
Visionaries Help Raise $3 Million for PHH Research
On November 2, 2018, in New York City, philanthropists, business leaders, researchers, and families came together to raise national attention about hydrocephalus and funds to advance hydrocephalus research. The 2018 Vision Dinner, generously underwritten by Craig and Vicki Brown, celebrated the completion of a three-year campaign to raise $3 million to support a focused research initiative into posthemorrhagic hydrocephalus (PHH), the development of hydrocephalus after a brain bleed. Since the first Vision Dinner in 2013, the initiative has played a critical role in growing investments into the Hydrocephalus Association’s Research Program.
CHANGE MAKER
Craig and Vicki Brown
Thanks to Craig and Vicki Brown, the Vision Dinner has become a major organizational strategy to increase awareness and funding of hydrocephalus. Under their leadership, the Hydrocephalus Association through this event produced three awareness videos, launched a strategic public relations campaign and has raised $3 million for PHH research. The Brown’s passion for this condition stems from their son, Jeff, who was diagnosed with hydrocephalus at age 19.
Craig and Vicki Brown
Benefactors of the Hydrocephalus Association
“Vicki and I launched the Vision Dinner initiative in 2013 to raise awareness of hydrocephalus and its impact on patients and families while we work to improve treatments and ultimately find a cure to end the suffering caused by the condition. The Vision Dinners represent a campaign designed to bring together the hydrocephalus community to share information, spotlight progress and chart a course for the future.”