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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WOODBRIDGE – Kim and Michael Illions remember feeling helpless when their son, Cole, was born with hydrocephalus, an incurable brain condition, in 2005. Although the couple had learned during her pregnancy that he would have the condition, they had few places to turn to for support.

According to Illions, hydrocephalus occurs in approximately one of every 500 births and in more than one million Americans today. (including former Congresswoman Gabrielle Giffords.) Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

Placing a shunt in the brain to treat Hydrocephalus was a procedure which carries a high infection rate and several shunts will need to be replaced due to infection or rejection by the brain.

“It was very frightening,” Illions said. “At one day old, Cole had his first brain surgery and had a shunt placed in his brain. We came home with Cole from the hospital, and after a week, he had his first shunt infection. He had 13 brain surgeries because of the malfunctioning of the shunt, but none were successful until 2009.”

Cole, who spent most of the first year of his life in the hospital, now attends special-needs classes at a school in Woodbridge township and is reading and excelling in mathematics. He communicates through a special talking device.

The Illions’ journey with their son led them to not only maintain a fierce determination to see Cole through his condition, but also propelled them to establish the Pediatric Hydrocephalus Foundation (PHF) in Woodbridge.

While the Illions volunteered for a couple of years with the Hydrocephalus Association, they decided in 2008 that they wanted to make their own mark in raising awareness. They teamed up with three other families and were approved in 2009.

PHF maintains 34 state chapters and assists the medical community by raising funds to search for treatment options and ultimately a cure.

The organization advocates on behalf of members while working with policy makers at state and federal levels to push for more research and support in the fight against hydrocephalus.

Since 2010, PHF awarded $225,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education. All monies raised go directly to funding research.

“Prior to PHF, there was very little awareness about hydrocephalus,” Illions said, adding that no legislation was in place to support funding research for a cure, no special color for ribbons of support that are often used to represent other conditions and no dedicated month of awareness.

Currently, PHF has events scheduled all over the country to raise awareness. From support groups to golf outings, restaurant charity fundraisers to baseball game fundraisers. The color of light blue represents hydrocephalus and N.J. state Sen. Joseph Vitale recently attended a PHF support group meeting as chairman of the Senate Health Committee.

A flag-raising ceremony is held in Woodbridge township to mark September as Hydrocephalus Awareness Month.

HAILIE’S STORY

At last year’s flag-raising ceremony, the Illions became acquainted with the Mussinan family, who was reaching out for the same support that they had once needed with Cole.

Melody Mussinan’s daughter, Hailie, who is now four, may have scars and stitch marks on her head from surgery due to hydrocephalus, but she is a cheerful girl at heart who adores dancing.

Recently, she was named one of two children who will serve as PHF’s National Face of Hydrocephalus Awareness. She will represent the girls, while Owen Rush, 4, of South Carolina, will represent the boys.

Hailie and Owen were randomly selected in the national contest, which was held in January, and they will travel to Washington, D.C. in August for National Hydrocephalus Awareness Day on Capitol Hill. There, families like the Illions and Mussinans will meet with members of Congress and their staff to raise awareness and underline the importance of funding for much-needed research.

Melody Mussinan, who is grateful that Hailie and her family will have the opportunity to be heard and represented on Capitol Hill, lives every day with the fear that her daughter’s shunt will malfunction or an infection will set in.

Yet, her daughter’s determination to pursue her love of dance at the Jill Justin Dance Alliance dance school in Edison is one silver lining that keeps her confident that her daughter is a strong and spunky little girl.

Mussinan is hopeful that there may be hope for children like Hailie and Cole.

“Maybe one day there could be a cure and our children can live normal and productive lives,” she said.

For more information about PHF, 66 Caroline Street in Woodbridge, call 732-634-1283 or visit www.hydrocephaluskids.org.

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The Pediatric Hydrocephalus Foundation hosts a number of family activities around Woodbridge to raise money and awareness of a pediatric brain condition.

Skyline Mini-Golf had a line full of families on Saturday morning during an event meant to raise awareness of a childhood brain condition.

The Pediatric Hydrocephalus Foundation was founded by Woodbridge residents Michael and Kim Illions in 2009, after their son, Cole, was diagnosed with the brain condition.

The foundation has since grown to include 35 state chapters and one in Africa, according to the Illions.

Proceeds from the event came from 16 hole sponsorships on behalf of Woodbridge businesses and individuals, including Mayor John McCormac and Assemblyman Craig Coughlin, Michael llions said.

The “family fun” event was intended to raise awareness among participants, who were charged the same rate as Skyline Mini-Golf charges at any other time, he said.

The Pediatric Hydrocephalus Foundation’s next event will be a spaghetti dinner from 2-6 p.m. Nov. 3 at the Edison Elks, 375 Old Post Road in Edison. Tickets are $12 for adults and teenagers, $6 for children ages 5-12 and free for children ages 4 and younger. A 50/50 raffle, silent auction and basket raffle will be held.

Visit www.HydrocephalusKids.org for more information.

Play mini-golf on Oct. 5 to raise money to research and cure the condition.

The Pediatric Hydrocephalus Foundation invites Woodbridge families to Skyline Mini-Golf on Saturday, Oct. 5 for a fundraising event that will benefit children with the brain condition.

At 10 a.m. Oct. 5, Mini-Golf Family Fun Day will entail rounds of mini-golf, giveaways and door prizes.

The day’s guests of honor are Anthony Pascale and Cole Illions, two eight-year-old boys living with the condition who have undergone a total of 15 brain surgeries, according to a press release from the Pediatric Hydrocephalus Foundation.

Cole Illions’ parents are Michael and Kim Illions, Woodbridge residents and founders of the Pediatric Hydrocephalus Foundation.

Admission is $7 for adults, $5 for children.

Visit www.HydrocephalusKids.org for more information.

Contact Kimberly Illions at 732-634-1283 or kim@hydrocephaluskids.org for more information.