Hydrocephalus is the leading cause of brain surgery in children.
Rep. Josh Gottheimer (NJ-5) has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Rep. Josh Gottheimer’s support of the over one million people living with the condition.
“We must keep taking every possible step toward finding treatments and cures for life-threatening conditions and disorders. That’s why I’m proud to be advocating for families who have hydrocephalus, alongside Bergen County Commissioner Steve Tanelli, whose own grandson Landon was diagnosed with hydrocephalus in utero and has had 3 brain surgeries since birth,” said Rep. Josh Gottheimer. “Current treatments for hydrocephalus tend to fail and require multiple surgeries, so increases in research will go a long way for families. I am ready and willing to work with anyone to help make breakthroughs for people living with hydrocephalus in North Jersey and across the nation.”
“We are grateful to Congressman Gottheimer for joining the Congressional Hydrocephalus Caucus and helping us advance research and improve the lives of the over 1 million Americans living with this condition,” said Diana Gray, President and CEO of the Hydrocephalus Association. “The Caucus has been instrumental in helping the hydrocephalus community advocate for substantive changes for patients, and opening doors to new research opportunities that could result in alternative treatment options, forms of prevention, and a cure.”
The Congressional Pediatric and Adult Hydrocephalus Caucus serves to inform the congressional community about the needs of those living with hydrocephalus and their families and caregivers. The Caucus also advocates for research at the National Institutes of Health and the Department of Defense, health policy including the Affordable Care Act, Medicare and Medicaid, special education and rehabilitation services.
Each year, one in every 770 babies develops hydrocephalus, a complex 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.
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.