Congress Recognizes September as Hydrocephalus Awareness Month

Aims to raise awareness of the impact of hydrocephalus and COVID-19 especially in older adults.

What if brain surgery was the only way to stay alive? For the over 1 million Americans living with hydrocephalus, the leading cause of brain surgery in children, it is. That’s why the U.S. House of Representatives has recognized September as Hydrocephalus Awareness Month. Hydrocephalus is a chronic neurological condition that has no cure and can only be treated with brain surgery. Many people with hydrocephalus suffer from other co-occurring conditions, particularly seniors who have Normal Pressure Hydrocephalus. This puts them at a higher risk for severe illness from COVID-19.

Congressmen Chris Smith (R-NJ) and Lloyd Doggett (D-TX), who are co-chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus, have long been champions for this cause, sponsoring and supporting Congressional resolutions for Hydrocephalus Awareness Month over the past few years. This month, Representatives Ron Kind (D-WI), Abigail Spanberger (D-VA) and Rep. Josh Gottheimer (D-NJ) joined the Caucus. The Caucus has been instrumental in helping the hydrocephalus community advocate for substantive changes for patients, opening doors to new research opportunities that could result in alternative treatment options, forms of prevention, and a cure.

Several states and cities have passed Hydrocephalus Awareness Month proclamations, including Pennsylvania, North Carolina, South Carolina, Indiana, Columbia, S.C., Colorado, North Carolina, Arkansas, Kentucky, Louisiana, and Bergen County, N.J. Throughout September, people across the country are raising awareness by sharing facts about the condition on social media and by participating in the virtual WALK to End Hydrocephalus.

“Hydrocephalus is as common as Down syndrome, yet there isn’t wide recognition of the disorder and government funding for hydrocephalus research pales in comparison to other neurological conditions like Parkinson’s or MS,” said Diana Gray, President and CEO of the Hydrocephalus Association. “We applaud Congress and members of the Congressional Hydrocephalus Caucus for helping to increase public recognition of this condition, which affects people of all ages and from all walks of life.”

Each year, one in every 770 babies develops hydrocephalus, a complex, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. Some two-thirds of our current and former military service members suffering from moderate to severe traumatic brain injuries are at risk of developing hydrocephalus. The primary treatment for hydrocephalus is the insertion of a device called a shunt –a small tube and a connected valve – into the brain to drain the excess cerebrospinal fluid to another part of the body. 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 throughout their lifetime, and some individuals will undergo more than 100 surgical procedures. Each surgery brings with it the risk of unknown long-term cognitive and health effects, and hydrocephalus can be fatal.

Since 2009, the Hydrocephalus Association has invested over $11 million to research, making it the largest nonprofit, non-governmental funder of hydrocephalus research in the U.S. Our grantees have gone on to secure over $33 million in additional funding to continue their research.

About the Hydrocephalus Association  

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. Since 2009, HA has invested over $11 million in cutting-edge research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition.