Caucus will help families in California’s Central Valley impacted by a brain condition that has no cure
This week, Congressman TJ Cox (D-CA) announced that he has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Representative Cox’s support for our community. His action reflects a welcome commitment to working with his colleagues in Congress to find practical, bipartisan solutions for the over one million Americans living with this condition.
“We appreciate Representative Cox’s leadership in joining this critical caucus. Through this action he has become a vital Congressional champion for our community. We look forward to working with him and other members of the Caucus to identify policies and programs that will improve quality of life, identify better treatments, and possibly find a cure,” said Diana Gray, President and CEO of the Hydrocephalus Association.
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, including funding for research from the National Institutes of Health and Department of Defense, health policy including the access to affordable healthcare, Medicare and Medicaid, special education and rehabilitation services.
“I’m proud to stand up for families like Judy Ames’ from Hanford whose son, Holden, was diagnosed with hydrocephalus at only five days old,” Said Rep. TJ Cox. “Current treatments for hydrocephalus tend to fail and require multiple surgeries, so increases in research will go a long way for families like Judy’s. This effort will require all hands-on deck and I’m ready to work with anyone and everyone so we can make breakthroughs for people living with hydrocephalus in the Central Valley and across the nation.”
Judy Ames knows first-hand how devastating hydrocephalus can be on families and hopes the Caucus will support increased investments in research that will lead to a cure. Her son Holden, now 17, had to have emergency brain surgery to have a shunt placed to manage his hydrocephalus when he was six months old.
“That shunt lasted one week before he had to have another surgery to have another shunt placed. Then he had no shunt issues until he was 9 years old. At 9, he had multiple shunt revisions within two years. He was sick for a year and missed a half a year of school,” Judy said. “Since then, he has also had a cranial expansion which has not helped with his pain. He has constant headaches and after a few brain bleeds, has lost much of his short-term memory. Holden has had a total of 21 brain surgeries.”
Like many parents of children living with hydrocephalus, Judy lives in constant fear of when Holden’s next brain surgery will be. That’s why each year she helps organize the Fresno WALK to End Hydrocephalus to raise awareness and funds for a cure.
Hydrocephalus—sometimes colloquially referred to as “water on the brain”—is a complex, life-threatening neurological condition affecting more than one million Americans of every age. Anyone at any time can develop hydrocephalus from a brain injury (including members of the military), tumor, infection, or for unknown reasons as part of the aging process. The condition has no cure and can only be treated through brain surgery. The most prevalent treatment involves the placement of a shunt into the brain to siphon excess cerebrospinal fluid from the brain to another part of the body. This technology carries lifelong risks of device failure and infection that necessitates costly repeat brain surgeries and potentially severe complications, including death.
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 $10 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.