Sixteen States Join Congress in Declaring September Hydrocephalus Awareness Month

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Sixteen 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, MD | September 1, 2016

Indiana Hydrocephalus Awareness Month

Alyse McGlaughlin and Amanda Cloyd, Indianapolis Hydrocephalus WALK Co-chairs, show the Hydrocephalus Awareness Month proclamation for the State of Indiana

Today marks the first day of Hydrocephalus Awareness Month, a month dedicated to raising awareness about a lesser known medical condition that has no cure and impacts over 1 million Americans. Sixteen states have joined the United States Congress in proclaiming September as Hydrocephalus Awareness Month. The Hydrocephalus Association is grateful to the Governors of Alabama, Colorado, Connecticut, Georgia, Illinois, Indiana, Kansas, Maryland, Michigan, New York, North Carolina, Pennsylvania, South Carolina, Tennessee and Virginia for working with local community leaders of the Hydrocephalus Association to bring critical attention to this challenging neurological condition. These fifteen states unite with the State of West Virginia, who once again has supported the hydrocephalus community with a proclamation.

“Receiving Indiana’s first proclamation feels like a giant accomplishment not only for me, as an adult living with hydrocephalus, but for everyone living with this condition in Indiana,” shared Alyse McGlaughlin, who was diagnosed with hydrocephalus when she was 18 years old and is the co-organizer of the Indiana Hydrocephalus Association WALK. “It may be just a piece of paper to someone else, but to me it means there is so much hope for better days ahead for not only myself, but all the innocent lives who have to suffer or possibly lose their battle with this condition. Brain surgeries will not be our only option; they’re just a solution for now.”

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.

“I am very excited and grateful to Governor Wolf for declaring September as Hydrocephalus Awareness Month in Pennsylvania. I’m hopeful that September will be a time of learning, understanding and recognition of those of us who have hydrocephalus and our families,” stated Sierra Smith, the Eastern Pennsylvania Hydrocephalus Association Community Network Chair.

Local volunteers around the country worked with their elected representatives to make these proclamations a reality. The Hydrocephalus Association would like to extend our deepest gratitude to New York State Senator John J. Flanagan who, for the last 8 years, has put forth the proclamation request for the State of New York. In addition to state support, the Town of Centerton, Arkansas, Chicago, Illinois, Chattanooga, Tennessee, and a group of cities and towns in upstate New York have also lent their support of the hydrocephalus community. In New York these include Erie County, Town of Grand Island, City of Rochester, City of Batavia, Town of Tonawanda, City of Niagara Falls, and City of Buffalo. The Town of Wichita, Kansas, will illuminate the downtown in hues of blue for the entire month of September. Niagara Falls and the Peace Bridge will turn blue on the evening of September 9th to commemorate the awareness proclamations.

On the Federal 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 on a national level, opening doors to new research opportunities that could result in alternative treatment options, forms of prevention, and a cure. U.S. Congressman Chris Smith (R-NJ) has introduced the Advancing Research for Hydrocephalus Act (H.R.2313), which would establish a national hydrocephalus registry. This registry would help us better understand the condition and help to inform decisions around research, which is essential to finding treatment options – and, one day, a cure(s).

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 $4.5 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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4 Comments for : Sixteen States Join Congress in Declaring September Hydrocephalus Awareness Month
    • Paul c
    • July 1, 2017
    Reply

    I was diagnosed with obstructed hydrocephalus non com at age 24. Living in ky had really no doctors to treat it. So had to travel to Nashville. Have had multiple surgeries. 1 shunt was not enough. So I have a shunt on both sides of my head placed. I went from 210 pounds to 158. And I stay bed ridden any more. Some people have decent outcomes after the shunts or if there kids. But during one of my shunt failures I stayed in demetia state for close to a month before I was ever Ct scanned or anything cause the docs wouldn’t listen. They don’t want to beleive another shunt had went bad. And after that is when the 2 was needed. But I wish my state would pick up September also. I just don’t beleive and many other don’t either that our governors or senators give a crap about anything but money and more money. Unless there kids have something. It’s not a issue. But sep is pretty good. Birth month

    • Eric Arrowood
    • February 11, 2017
    Reply

    Hi my name is Eric I have the horrible condition hydrocephalus I was diagnosed at the age of 3 I am now 40 I have had many surgeries do to the condition it is definitely very difficult to deal with Evey day of your life

    • Amber Rowen
    • September 2, 2016
    Reply

    Thanks to all the States who participated in this incredible stand! Thank you to the HA, as a individual with Hydrocephalus, I am soo greatful for awareness month. It gives me hope.

    • Peg Chapman
    • September 1, 2016
    Reply

    Just learned of this from a fellow parent. We support whatever can be done as far as research. Our daughter was diagnosed at 6 months. She was followed and fortunately no shunt required however; 11 months later she was diagnosed with medullablastoma (brain cancer) . We passed our 10 years cancer free this past June. We had brain surgery, chemo and stem cell transplant.
    Thank you again for your time.

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