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.

Source:

GRAVES COUNTY, Ky – A local boy is fighting a lifelong, rare, incurable disease. Hydrocephalus or more commonly known as “water on the brain” is when fluid builds up inside the skull and leads to brain swelling.

Ten-year-old Payton Kraft often finds himself playing alone.

“Other kids don’t understand what I go through. None of them do,” said Payton.

“Payton was probably 3 to 4 months old and we noticed he wasn’t progressing like normal children do. He was delayed,” said Payton’s mother, Sarah Wilson-Kraft.

That delay, had Payton’s mom, Sarah panicked something was wrong.

“His head was extremely large for his age…They measured his head many of times and they sent us for a cat-scan and that’s when he was diagnosed,” said Wilson-Kraft.

Payton was diagnosed with Hydrocephalus, which is an incurable, brain disease.

“There was a lot of fear, unknowing what was going to happen and concern for him,” said Wilson-Kraft.

September is National Hydrocephalus Awareness month. Payton’s mom is raising funds with arts and crafts with the hope of one day finding a cure.

“The only thing we can do is pray everyday there’s no infection,” said Wilson-Kraft.

In the meantime, a shunt was placed in Payton’s brain.

“It’s in the center of his head, that goes down his neck into his stomach and drains the fluid out,” said Wilson-Kraft.

Payton considers himself a fighter, but he says every now and then his shunt hurts him. He vows to never give up and to continue educating others about his condition.

“I hope one day that there will be an end to this,” said Payton.

In her spare time, Payton’s mom, Sarah Wilson-Kraft, spends her time crafting to help fundraise for a cure to Hydrocephalus. She makes scarves, wreaths, bracelets, ribbons and bows, rugs and tu-tu’s. To check out those items and help fundraiser for Hydrocephalus, click here.

To donate to Payton and help fund a cure for Hydrocephalus, click here.

FRESNO, Calif. (KMPH) –

Carrie Awbrey, California Chapter Director for the Pediatric Hydrocephalus Foundation, visited Great Day to talk about a perilous condition more commonly known as “water on the brain.”

The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition.

The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.

The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.

The PHF, Inc. is a non-profit 501 (c) (3) charitable organization and as such, all contributions are tax deductible to the extent allowed by law.

Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus.

As part of the PHF’s Hydrocephalus Awareness Over America (HAOA) campaign, today, Saturday, September 21st is the 1st ever Hydrocephalus Awareness Day in Hawaii!!

Congratulations to PHF State Chapter Director’s Shaula Tualaulelei & Amanda Klebe in getting this done, and to Governor Abercrombie for his participation:

WASHINGTON– Congressman Leonard Lance (NJ-07) issued the following statement in support of September as National Hydrocephalus Awareness Month.

“Today we recognize September as National Hydrocephalus Awareness Month. For too long, little attention has been paid to hydrocephalus.

I am certain that with federal support for additional research we can develop a better treatment, and eventually a cure, for those suffering from hydrocephalus and help them live healthier, fuller lives.”

In the House of Representatives, Lance is a founding member and co-chair of the Congressional Hydrocephalus Awareness Caucus and actively works to raise awareness of the disease.