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.
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.”
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.”
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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.
Scientists from The University of Texas at Arlington and the University of North Texas Health Science Center are building a prototype for an implantable in-line shunt flow monitoring system that would deliver both on-demand and continuous readings of hydrocephalus.
Sandy Dasgupta, the UT Arlington Jenkins Garrett Professor of Chemistry and Biochemistry, and Aditya Das, senior research scientist at the UT Arlington Research Institute, received about $100,000 for the project from the Texas Medical Research Collaborative. The UT Arlington researchers are working closely with Dr. Anthony Lee, a UNT Health Science Center surgeon.
Hydrocephalus is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid in cavities of the brain. This can cause pressure inside the skull which can lead to convulsions, tunnel vision, blindness, balance and coordination issues, mental disability and even death if untreated. Current treatments for the condition utilize a cerebral shunt, or catheter to drain excess fluid. These catheters often can become blocked, infected or outgrown.
The collaborative product could lead to better treatment, especially in infants and children who account for a large proportion of shunt operations every year. About 75,000 shunt operations per year are in infants and children. There is a relatively high rate of complications as late as 17 years after initial placement of the device, according to the National Institutes of Health.
The new shunt system tries to prevent breakdowns by being proactive in monitoring flow of fluids and catheter malfunctions on-demand. It also could help neurosurgeons better understand shunt functions such as whether issues related to malfunction are due to flow or obstruction.
“I have seen the effect of hydrocephalus up close. As a teenager, I saw my infant cousin born with hydrocephalus. He did not survive more than two years,” Dasgupta said. “Now shunt implantation quality of life and life expectancy are far better, but shunt failure and timely diagnosis of that are still problems. It will be a privilege to play a role to help solve this problem.”
Additional benefits of the in-line shunt flow monitoring system include an ability to diagnose in a hospital, outpatient setting or at home in real-time to allow for earlier detection. It also provides research platforms for other biomedical applications including cardiovascular disease treatment and the functional status of artificial organs.
“The entire hydrocephalus community is invested in seeing this research project yield results. Any opportunity to reduce the amount of failures of a shunt, and lengthen the life of the performance of the shunt is welcomed,” said Michael Illions, vice president and director of advocacy for the Pediatric Hydrocephalus Foundation. “A better shunt and less brain surgeries equal a much better outcome for those living with hydrocephalus.”
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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