FAIRFIELD, Conn. — ZenRide Spinning Studio in Fairfield will host the first “Biker-Barre” to help fund research for a cure and awareness about a rare and complex childhood medical issue on Sunday, Sept. 13.
The ride will be at the spinning studio at 869 Post Road in Fairfield beginning at 4 p.m.

The event raises money for the Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization. Pediatric Hydrocephalus is the build up of spinal fluid in the brain, which can lead to injury or even death if not treated.

Participants will sweat, sculpt and stretch, then enjoy some bubbly and bites while bidding on silent auction items. All proceeds will go directly to the PHF. Fairfield’s Bar Method is co-hosting the event with ZenRide.

Fairfield resident Cindy Shanley, a ride instructor at ZenRide, has a young daughter, Reagan, with Pediatric Hydrocephalus. Reagan turns 3 years old on Oct. 8. Last year, Fairfield’s Sally Fulcher ran the Fairfield Half Marathon to raise awareness and funds for the PH Foundation. She netted nearly $17,000.

The Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition.

Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible.

September is National Hydrocephalus Awareness Month and it is estimated that one in 500 babies in the United States are born with Hydrocephalus each year.

The event costs $40 to reserve a bike. Click here to register online and click here to donate.

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Aug 27, 2015 Press Release

Bipartisan Lawmakers Kick Off September National Awareness Month

Congressman Leonard Lance (NJ-07) today announced his partnership with Congressman André Carson (IN-07) to serve as the bipartisan co-chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus. Hydrocephalus is a debilitating neurological condition that affects over 1 million Americans. The Caucus will focus on increasing awareness and education and encouraging more research into its diagnosis and treatment.

“Hydrocephalus is a tremendous public health challenge of which there is no single known cause or ways to prevent or cure the condition. Education, research and communication are key tools to understand and confront Hydrocephalus and the Congressional Hydrocephalus Caucus will be a platform for those discussions. One out of every 500 babies in the United States is born with hydrocephalus, making the condition the leading cause of brain surgery in children. Additionally, an increasing number of our veterans are developing post-traumatic hydrocephalus as a result of brain injuries suffered on the battlefield,” said Lance, a member of the Energy and Commerce Health Subcommittee.

Congressman André Carson (IN-07) added, “I am pleased to join Rep. Lance in announcing the launch of the Caucus in the 114th Congress. Many families in my district in Indiana are affected by hydrocephalus. I look forward to working with the other caucus members and dedicated advocates to raise awareness of hydrocephalus and encourage more innovative research to improve diagnosis, treatments, and cures.”

Michael Illions, a Woodbridge resident and a leader in the Pediatric Hydrocephalus Foundation said, “Congressman Lance and Congressman Carson continue to show their support for the Hydrocephalus Community. We look forward to working closely with the Congressional Pediatric and Adult Hydrocephalus Caucus as it continues to grow. We thank them for their leadership of the Caucus.”

“I thank Congressman Carson for joining me in this effort and I commend the hard work of Michael and Kim Illions of Woodbridge, New Jersey for their advocacy on behalf of their son, Cole, and helping to lead this national conversation,” concluded Lance.

September is National Hydrocephalus Awareness Month. Recognizing the month of September as National Hydrocephalus Awareness Month brings public attention and encourages the discussions necessary to address more effectively the devastating effects of this disease and provide support to families who live with it every day.

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A 16-year-old suffering from the incurable brain condition fundraises for a cure

HORSEHEADS, N.Y. (18 NEWS) –

Bella Sacharczyk is 16 years old. She’s smart, funny, and charismatic. A typical teenage girl. You would never guess that she’s had 20 brain surgeries, but Bella has Hydrocephalus, a incurable condition that involves water in the brain.

On Sunday, she joined together with her family and friends to raise awareness about the disease and fundraise for a cure.

“I feel it’s important for everybody to know about it and to raise awareness, just so that one day some children like me won’t have to suffer,” Bella said.

“We’re just trying to be out there anyway we can to raise awareness to raise funding for a cure,” Denise Sacharczyk, Bella’s mother, said. “There is no cure for children or people with Hydrocephalus.”

Even though people living with Hydrocephalus can experience some pretty serious physical and mental complications, Bella’s family wants people to know her struggles don’t define her or limit her.

“Hydrocephalus is, it can be scary, but doesn’t have to be scary… that the children like Bella, she does everything, she’s not afraid,” Denise said.

“I like to do my schoolwork, and I like to educate people about Hydro, hang out with my family,” Bella said.

Bella is grateful for all the support she got from our community.

“That everybody came here to support me… I feel loved and it’s the best feeling in the world.”

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Pediatric hydrocephalus is treatable but has made it difficult for girl to walk

A benefit is planned later this month in Horseheads for a 16-year-old girl with pediatric hydrocephalus, an incurable but treatable brain condition that has made it hard for her to walk.

Raymour & Flanigan and the Pediatric Hydrocephalus Foundation will host “Bella’s Journey” from noon to 5 p.m. Aug. 16 at the furniture store, 137 Colonial Drive in Horseheads. It will feature live music, face painting, games, activities, a bake sale, raffles and more. Prizes included a $100 Raymour & Flanigan gift card. All proceeds will benefit the foundation.

The benefit is being held for Isabella Sacharczyk, 16, from Westhampton, Mass., who will be there with her mother, said Michael Illions, vice president and national director of advocacy for the foundation. Bella has made it her mission to raise money for the foundation, he said.

The foundation provides support those affected by hydrocephalus, seeks to raise awareness and works with the medical community to find a cure.

Bella’s grandmother, Jeannine Zimmer of Horseheads, said she is friendly with Nicole Gulich, the former manager of the Raymour & Flanigan store in Horseheads who is now a district manager. Her son also has disabilities, she said.

Bella told Gulich her story and the amount of brain surgeries she has had, and this event was created from that connection, Illions said.

“She’s had 20 brain surgeries. The last one she had,” Zimmer said, “was to help her mind and her legs to work together. She can’t walk well. She walks with a cane, and she does wear braces, but she doesn’t wear them all the time.”

Her granddaughter, who turns 17 next month, was 2 months old when she was first diagnosed with pediatric hydrocephalus, she said. “She got bacterial meningitis, which caused hydrocephalus,” she said.

Hydrocephalus, also known as “water on the brain,” is the accumulation of cerebrospinal fluid inside the brain, according to Johns Hopkins Medicine. This can be a very dangerous condition, as the normal production and recycling of spinal fluid throughout the neurological system is disrupted. There is no cure, but hydrocephalus can be treated surgically.

“She didn’t go to school this whole last year after the surgery she had because she couldn’t walk well enough to go, so she was tutored at home, and she did marvelous,” Zimmer said.

“The sad part with Bella is she’s gone to the same high school as kids that she grew up with,” she said, referring to Hampshire Regional High School. “But when they found out that she had a disability, the kids stopped asking her to come over to their house. So she doesn’t have a lot of friends, but she does have some friends. She’s a homebody.”

Follow Ray Finger on Twitter @SGRayFinger.

How to help

To make a tax-deductible donation, mail a check payable to the Pediatric Hydrocephalus Foundation to Kim Illions, Pediatric Hydrocephalus Foundation Inc., 66 Caroline St., Second Floor, Woodbridge, NJ 07095. Donations can also be made online by credit or debit card by clicking here.

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