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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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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CRANBURY — As the auditorium went dark Friday night and the excited din of audience members descended into silence, the Cranbury School’s Kindness Club got the third annual Cranbury Idol rolling and shone a spotlight on pediatric Hydrocephalus.

Several hundred people came out to offer support and serve as judges for the eight contestants, all of whom are students at the school.

Opening the show, Raegan Oake sang “Fly Before You Fall,” followed by “Are You Gonna Go My Way,” which was sung by Andy Ciardella.

Next in the lineup was Christy Phillips, who sang “Killing Me Softly,” and Isabella Ames, who performed “Love Somebody,” accompanying herself on guitar.

Julia Patella gave the crowd a taste of “Explosions,” while a rendition of “I’m Yours” was sung by Sonal Mallick.

Rounding out the program was Bay Daily, with a performance of “Remember the Name,” and Sara Reilly, who sang “Let It Go.”

A suggested $5 donation was collected at the door, with all of the proceeds going to support the work of the Pediatric Hydrocephalus Foundation.

According to the foundation, Hydrocephalus is a lifelong condition, which affects more than one million Americans, from newborns to seniors.

The primary characteristic is excessive accumulation of fluid in the brain, with the excess fluid resulting in an abnormal widening of spaces in the brain called ventricles.

This widening creates potentially harmful pressure on the tissues of the brain, according to the foundation.

Hydrocephalus is most often treated by surgically inserting a shunt system, which diverts the excess fluid to another area of the body, where it can be absorbed through the normal circulatory process.

Nationwide, an average of 40,000 shunt operations are performed each year and Americans spend more than $1 billion annually to treat this condition, according to the foundation.

Currently, there is no known cure.

According to Chief School Administrator Dr. Susan Genco, Cranbury Idol was conceived in 2013 by former Cranbury School student Amir Moon, as a way to raise money for the Children’s Hospital of Philadelphia.

In keeping with the theme of giving, the recipient of last year’s Idol proceeds was One Simple Wish, a non-profit organization that enables individuals to grant wishes to foster children.

Twelve-year-old Kylee Tucholski had a very personal reason for nominating PHF as this year’s Idol charity.

“My little brother Nicholas was born with Hydrocephalus and he was my inspiration to go above and beyond to help find a cure for Hydrocephalus,” Kylee said. “I wanted to raise awareness so I decided to use the Pediatric Hydrocephalus Foundation to work for my brother and other kids with Hydrocephalus.”

The lights came up as the last note of round one finished ringing, signaling the arrival of intermission.

Kindness Club members moved throughout the audience, distributing iPads and inviting people to cast their votes for their top three favorites before making their way to the cafeteria, where refreshments and baked goods awaited.

For Isabel Kinney, 14, and her friend Aevyn Peacock, 13, Cranbury Idol was a great way to spend Friday night.

“We love the show,” Isabel said. “We like listening to all the performers and it’s for a really good cause.”

Aevyn said that both she and Isabel are friends with all the contestants and that the show helped them see them in a whole new light.

“It’s fun seeing our friends perform like that because we’ve never really seen them that way,” she said.

Both girls said that they were surprised by how difficult it was to narrow the field and vote for their favorites.

Round two saw Julia Patella, Isabella Ames and Bay Daily vying for the title of Cranbury Idol, as they each performed a new song for the audience.

As the performances wrapped, Kindness Club members once again made their way around the room with iPads, recording votes from audience members.

With the votes in and tallied, it was time for the big reveal.

To thunderous applause from the audience, Julia Patella was named second runner-up, Bay Daily was named first runner-up and Isabella Ames was announced as the new Cranbury Idol.

“I really wanted this and I was really determined to get it,” Isabella, 11, said, as she flashed a smile. “I feel amazing!”

According to Dr. Genco, a donation in the names of all of the winners will be made to the foundation.

While Isabella, Bay and Julia may have had a good night, they weren’t the only ones.

“This was a big deal for us,” PHF Vice President and Director of Advocacy Michael Illions, said. “You can see, the turnout was unbelievable, everybody was really into it.”

Acknowledging that Hydrocephalus is not a household name in the same way that breast cancer or Alzheimer’s disease are, PHF Board Member Mary Ann D’Oria said that educating the community is vital to making headway in research.

“Most people have not heard of it and it’s a good thing to get the cause out there,” she said. “The more people become aware, then the more funding we can get.”

Mr. Illions said that he and Ms. D’Oria each have a child with Hydrocephalus and that they have had a total of 70 brain surgeries between them.

When a shunt malfunctions, fixing it always involves brain surgery, Ms. D’Oria said.

“Our children always have to have their head cut open, (and) each time there’s a risk,” she said.

According to Dr. Genco, the Kindness Club began four years ago and consists of 20 students in grades six through eight.

It takes its inspiration from the ancient Greek storyteller Aesop’s quotation, “No act of kindness, no matter how small, is ever wasted.”

The Pediatric Hydrocephalus Foundation is a non-profit 501 (c)(3) charitable organization, according to the organization’s website. It is located at 66 Caroline St. in Woodbridge, N.J.

More information on Hydrocephalus can be found at www.hydrocephaluskids.org.

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NEWBURGH — Rebecca Lopez of Newburgh has for years quietly assisted the Pediatric Hydrocephalus Foundation’s New York State Chapter to help raise awareness and money to fund research projects on this rarely talked about, incurable brain condition. Lopez’s son, 10-year-old Isaiah, is fighting the disease, in which excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. It occurs in approximately one of every 500 births and in over one million Americans today. Because of the lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives. Untreated, hydrocephalus can be fatal.

Wanting to do even more, Lopez decided to take a more active and public role, and asked about joining the New York Chapter as an additional state director and take on additional responsivities in the all-volunteer Pediatric Hydrocephalus Foundation.

“I am involved with the PHF to not only help raise awareness and fund a cure, but to let my son Isaiah know that I will support him anyway imaginable. My dream is to find better treatment options and one day, a cure,” Lopez said.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 35 state chapters, provides support to families, friends and children affected by this incurable brain condition. PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at the State and Federal levels to push for more research and support in the fight against Hydrocephalus. Since 2010, PHF has awarded over $350,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education. For more information, visit hydrocephalusKids.org.

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