Caucus helps find solutions for the leading cause of brain surgery in children.
Rep. Cindy Axne (IA-3) has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Rep. Axne’s support of families impacted by hydrocephalus. Her action reflects a welcome commitment to working with members of Congress to find practical, bipartisan solutions for the over one million Americans living with this condition.
“I’m proud to be advocating for individuals living with hydrocephalus and their families,” said Rep. Axne. “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 Iowa and across the nation.”
The Congressional Pediatric and Adult Hydrocephalus Caucus serves to inform the congressional community about the needs of those living with hydrocephalus, their families and caregivers. 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.
“We are grateful to Representative Axne 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. “Support from members of Congress is crucial to helping us raise awareness about hydrocephalus and finding solutions to help patients and family members lead better lives.”
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.
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 nearly $12 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.