Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) is the nation’s largest and most widely respected organization dedicated to hydrocephalus. HA funds high-impact research, provides support and educational resources for patients and caregivers, and advocates on behalf of the hydrocephalus community on key policies and legislation.
Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles, resulting in pressure on the brain. HA began as a way to provide hope and support to those living with the condition and their parents and caregivers, and to educate the public about hydrocephalus. In 2009, HA launched a research initiative with the hopes of changing the future for the over 1 million people living with the condition in the U.S. The goals were ambitious – to stimulate the research ecosystem, identify the causes of hydrocephalus, and improve the lives of those living with the condition.
“Research became one of our top priorities because we knew in order to better understand this complex condition and identify new treatments that could lead to a cure, we had to fund high-quality research,” explained Diana Gray, HA President and CEO.
Today, HA is the largest non-profit, non-governmental funder of hydrocephalus research in the United States, investing over $12 million in research and awarding 43 grants to scientists since 2009. HA-funded scientists are conducting groundbreaking research, testing innovative techniques and drug therapies to prevent and stop the development of hydrocephalus in people of all ages – from the smallest preemies to seniors with Normal Pressure Hydrocephalus.
The drivers of HA’s research program are the Hydrocephalus Patient Registry and three research networks. Together, these programs encompass an extensive range of research from identifying new causes of hydrocephalus and testing novel treatments to optimizing current treatments and improving long-term outcomes and quality of life.
While $12 million may seem like a drop in the bucket compared to the research dollars dedicated to other conditions like breast cancer or Alzheimer’s, HA’s networks and researchers have been able to leverage that initial investment into larger federal grants, securing more than $35 million in additional funding to expand their research even further.
Through its research networks, HA has been able to grow the hydrocephalus research community and encourage collaboration among hydrocephalus basic and translational researchers. Thanks to partnerships with the National Institutes of Health and others, HA continues to expand funding opportunities for hydrocephalus researchers and works with many companies to improve the treatment and management of hydrocephalus.
“It’s an exciting time for the hydrocephalus field. We’re experiencing the expansion of hydrocephalus research in ways that we could not have foreseen, driven by the HA’s support of innovative research. Already, there are 10 drugs in testing, and 87 peer-reviewed studies [supported by the Hydrocephalus Association] were published about hydrocephalus. These successes will impact our community for years to come,” Gray said.