Initiative aims to raise awareness of an incurable brain disorder that affects 1 million Americans
Olivia Maccoux, a college senior from Minneapolis, MN, Jennifer Bechard, a 30-year-old from Detroit, MI, and five-year-old Abagail McCall from Washington, DC all have one thing in common. Each of them has celebrated more brain surgeries than birthdays. That’s because they have hydrocephalus, a chronic brain condition that has no cure and can only be treated with brain surgery. While hydrocephalus affects over 1 million Americans, there is little public knowledge about this brain disorder and not enough research dollars. That’s why, this month 23 states and cities across the country have joined Congress in declaring September Hydrocephalus Awareness Month.
Arizona; Arkansas; Colorado; Loveland, CO; Fort Collins, CO; Connecticut; Indiana; Indianapolis, IN; Iowa; Kansas; Louisiana; Massachusetts; Missouri; New Jersey; New York; North Carolina; Pennsylvania; South Carolina; Columbia, SC; Tennessee; Chattanooga, TN; Virginia; Washington; and West Virginia have proclaimed September Hydrocephalus Awareness Month. Throughout September, Hydrocephalus Association volunteers across the country will hold activities and charity walks to raise awareness and funds for hydrocephalus research and education programs.
Maccoux, diagnosed at birth with hydrocephalus, has endured over 140 brain surgeries to manage her hydrocephalus. Bechard, diagnosed at 11 years old, has undergone 111 brain surgeries and McCall had 12 brain surgeries before age 5. Like many people living with hydrocephalus, they don’t know if or when the next brain surgery will occur.
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. 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.
“Hydrocephalus is as common as Down syndrome, yet there isn’t wide recognition of the disorder and government funding for hydrocephalus pales in comparison to other neurological conditions like Parkinson’s or MS,” said Diana Gray, President and CEO of the Hydrocephalus Association. “With the help of our volunteers across the country, we hope to increase the public’s awareness about this condition, which is the leading cause of brain surgery in children.”
Local volunteers around the country worked with their local elected representatives to make the Hydrocephalus Awareness Month proclamations a reality. At the national level, the unwavering support of U.S. Congressman Leonard Lance (R-NJ) and U.S. Congressman Andre Carson (D-IN), Co-Chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus, have allowed the hydrocephalus community to 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.
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. More than 60 percent of HA’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. HA began funding research in 2009 and has since granted over $7 million to research, making it the largest non-profit and non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition.