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Walk aims to raise awareness of hydrocephalus

The seventh annual Western New York Walk to End Hydrocephalus will take place Saturday at Beaver Island State Park on Grand Island.

Hydrocephalus is caused by abnormal fluid build-up in the brain. Symptoms in infants and children include an enlarged head, and may include nausea, vomiting, headache and vision problems, according to the Hydrocephalus Association. One out of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida. It is the most common reason for brain surgery in children.

The condition also can strike in adulthood. A recent study estimates that 700,000 older Americans may be living with normal pressure hydrocephalus (NPH). Symptoms can include dizziness, vision problems, trouble walking and thinking, as well as loss of bladder control. NPH often goes undiagnosed and untreated. Of an estimated 5.2 million Americans diagnosed with dementia, 5% are believed to actually have the disorder, which is treatable.

There is no cure or medical therapy to treat hydrocephalus. The only effective treatments are surgical procedures using shunts developed a half-century ago to relieve fluid on the brain.

Larry McKenzie, whose granddaughter Hope Zientara, now 8, and his family helped organize the first Western New York walk, after Hope was diagnosed as a newborn. She’s had medical challenges “but we’re blessed to have her,” McKenzie said.

Stacey Monaco Fonagy, now in her 30s, was the other key organizer. She had been having symptoms of hydrocephalus for years before she was diagnosed correctly in her mid-20s. By that time, she had undergone emergency brain surgery to relieve the abnormal buildup of cerebrospinal fluid. Since then, she has married, has a son, and works full time with National Fuel Gas.

About 30 families impacted by the condition are expected to make up the more than 300 people for this year’s walk. Registration and sign-in for the 1.8-mile walk starts at 9 a.m. Saturday, with opening ceremonies at 10:45 and the walk to start at 11. There will be face painting, magicians, dancers, appearances by Sabertooth and Wonderwoman, and a basket raffle. Lunch will provided by several generous donors. The festivities last until about 1:30 p.m.

To register or learn more about local support for those with hydrocephalus, visit the Find a Walk tab at


Twitter: @BNrefresh@ScottBScanlon

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