Twenty-nine Cities and States Join Congress in Declaring September Hydrocephalus Awareness Month

29 cities and states unite with local leaders of the Hydrocephalus Association to provide awareness for a brain condition with no cure that affects over 1 million Americans

Bethesda, Maryland | September 01, 2017

Hydrocephalus Association launches a national awareness campaign to bring attention to a lesser-known condition affecting over 1 million Americans that has no cure and where the only treatment option requires brain surgery.

Hydrocephalus Association launches a national awareness campaign to bring attention to a lesser-known condition affecting over 1 million Americans that has no cure and where the only treatment option requires brain surgery.

Today marks the first day of Hydrocephalus Awareness Month, a month dedicated to raising awareness about a lesser known medical condition that currently has no cure and impacts over one million Americans. A combined twenty-nine cities and states have joined the United States Congress in proclaiming September as Hydrocephalus Awareness Month. The Hydrocephalus Association would like to thank the Governors of Alabama, Arizona, Arkansas, California, Colorado, Connecticut, Georgia, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maryland, New York, North Carolina, Pennsylvania, South Carolina, Tennessee, Texas, Utah, Virginia, Washington, and Wisconsin, and the Mayors of Chicago, Illinois, Chattanooga, Tennessee, Orlando, Florida, Long Island, New York, Washington, DC, and Wichita, Kansas, for working with local community leaders of the Hydrocephalus Association to bring critical attention to this challenging neurological condition.

In addition to state proclamations, local landmarks will also be turned blue to commemorate the month. The City of Wichita will turn the street lights downtown blue for the entire month to support their local hydrocephalus community. September 9th is Hydrocephalus Awareness Day in Chattanooga, Tennessee, where the Liberty Building and the Aquarium will be illuminated blue. The Chattanooga Lookouts, the city’s Minor League baseball team, will also be celebrating their local hydrocephalus community at that evening’s playoff game. The King and Queen Buildings in Atlanta, Georgia, will turn blue and gold, celebrating Hydrocephalus awareness and Childhood Cancer awareness, respectively. And in Essex, Maryland, local volunteers placed blue lights at the World War II Memorial.

Hydrocephalus is a neurological condition where excessive fluid builds up in the brain. The only way to treat the condition is with brain surgery, typically the implantation of a medical device known as a shunt, which as a 50% failure rate within the first 2 years in children. Individuals living with hydrocephalus are relegated to a lifetime of repeated brain surgeries, often accompanied with other learning and/or medical challenges. Hydrocephalus is not solely a pediatric condition. Anyone can get hydrocephalus at any time from a brain injury, infection, tumor, or, for unknown reasons, as part of the aging process. It is estimated that 700,000 seniors are living with Normal Pressure Hydrocephalus, but less than 20% are properly diagnosed. Many remain undiagnosed or misdiagnosed with Alzheimer’s or Parkinson’s, as the primary symptoms mimic that of aging or dementia. Advances in new treatment methods or means of prevention of all forms of hydrocephalus have been slowed by a lack of attention and research funding around the condition.

Local volunteers around the country worked with their elected representatives to make these proclamations a reality. 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 on a national level, opening doors to new research opportunities that could result in alternative treatment options, forms of prevention, and a cure. In order to raise the profile of the condition, the Hydrocephalus Association has launched a national awareness campaign, No More Brain Surgeries or #NOMOREBS.

Learn more about hydrocephalus and the work of the Hydrocephalus Association by visiting www.hydroassoc.org.

About the Hydrocephalus Association:

Founded in 1983 by parents of children with hydrocephalus, the Hydrocephalus Association (HA) has grown to be the nation’s largest and most widely respected organization dedicated to hydrocephalus. The largest advocacy group dedicated to hydrocephalus, HA is fighting on all fronts to improve the quality of life for people living with the condition. HA began funding research in 2009. Since then HA has committed well over $6 million to research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. For more information, visit the Hydrocephalus Association web site at http://www.hydroassoc.org or call (888) 598-3789.

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